Huntington's Disease Society of America, Inc.

I have found a supportive community that respects me and my decisions.

This is the premier nonprofit for those facing Huntingtons disease. The Center of Excellence program provides an opportunity for families to receive needed resources and HD testing needs to be done at a COE. Louise Vetter is the CEO and leader you want in the fight against HD.

Personal finance tools are also poor in my opinion.

A lot of help from a support group. Thank you for making it available online.

The staff member who helped me was knowledgeable and supportive. Thank you for all that you do.

I attended the Annual Convention this year and I have to say it has been life-changing. I hope to join more local events.

The annual HDSA National Convention is a sight to behold. It appears to be the largest collection of clinicians, scientists and family members (other organizations are even welcomed to share in festivities) brought together in the United States. There is so much great information that you can get from attending these events. It is truly the highlight of my year.

HDSA's resources are unmatched. Deep-dive into their website and there is a wealth of information at your fingertips!

I attended a walk this weekend and I enjoyed being able to connect with other families.

Everyone I have spoken to is knowledgeable and supportive. They listen to me and offer resources that can help me.

Thank you for all of the support you have given me and my family. I reached out to find local resources and the person who helped me was extremely knowledgeable and compassionate.

Strongly needs new leadership. No cure, weak advocating for Huntington disease patients, and no legislative success.

HD is known for the heartbreaking medical trial failure after failure, this begins with direction set at the top. The technology such as gene editing and gene therapy is here, Alzheimer's, SMA, and Duchennes Muscular Dystrophy are having success and passing HD up.

HD parity act was weak legislation with no teeth and leadership could not even get the act passed. So we keep working on last year to do list instead of having a parity act where we ask for an 2,000 bonus for social security disability for HD patients.

There is a drug Roche tominersen many felt helped us and we are not being allowed in the new trial. I had a call to ask HDSA to be more aggressive so I can be back on the possible life saving medicine and one out of the two dropped off call very early.

My understanding is they are unaware of the annual cost of HD to US government, which is in the billions I believe. This figure is absolutely necessary to advocate for billions from Congress.

I tried to educate about life-changing personal financial information every patient needs to hear from HDSA about the importance of having private long-term disability insurance, and I did not feel heard. I feel leadership lacks the skill set to do the job and it's showing with the medical trial and legislation failure.

I've attended several walks over the last few years and it is always nice to connect with other families.

All of the virtual events are nice for those of us that cannot get to them. I hope that you continue to do them so that we can be a part of the community.

The HDSA's National Youth Alliance helped my son find young people who can relate to the things we are experiencing. I am thankful for that!

HDSA and the NYA have done tremendous work to connect young people and their families and raise awareness for this little known disease.

wished we had more care closer to us, maybe one day.

i enjoy all of the updates. It is nice to be able to watch these when I have more time.

Very helpful resources that are also available online.

we have joined online support groups and they have been very helpful and convenient.

My husband has Huntington’s disease and was at the stage where he is abusive and aggressive. I was finding it very difficult to cope. Everything was my fault. Nobody else was right except him. It was like living in another world. Doctors prescribed clonazepam to controls his days and Mirapex at night to sleep. It was difficult to do anything normal, I retired in April that year and was with him 24/7, Around 7 months ago I began to do a lot of research and came across www Health Herbs Clinic com. it is a smashing one of a kind product for reversing Huntington's disease. After using the HERBAL FORMULA we purchased from healthherbsclinic. com, 4 months into treatment he improved dramatically we began to notice a reduction in symptoms till it all vanished. the disease is totally under control. No case of paranoia, particularly the hallucination, and his delusion. visit their website healthherbsclinic .com I Just wanted to share for people suffering from this horrible disease

I have been able to gain more knowledge by using their resources and CEU Program.

thank you for all the help and information you provided.

I've always had positive experiences when dealing with HDSA. They really are working to provide help and hope for HD families.

I use online support groups and it is a great resource. I don't live near one so to be able to connect even if it is online is very helpful.

We are a family who is affected by Huntington’s disease. Since it is so rare, doctors don’t really know how to give helpful advice/information to manage it. When we found HDSA it was such a blessing because they had reliable information which could help and guide us with our decisions and navigating our now altered future. This information is and has been tested/vetted and verified. In short the information is trustworthy and organized in an easy to navigate website. This nonprofit is impressively organized! The first line of introduction is their website then they have various parts of the organization which each serves a needed function-research, fundraising, giving of scholarships and grants for those interested in HD research, marketing, providing free continuing education for those in the medical field (so the latest info can be shared across multiple disciplinary fields). Then as if all of that wasn’t enough they organize a conference every year to share the latest news and the break out sessions are aimed at helping affected families in a very practical way. They have support groups and clinics all over the US which specialize in this rare disease and know exactly how to manage the symptoms and support the family. They know how to unify and instill esprit de corpse among the affected families and researchers. They are so encouraging in all they do with a compassionate approach to their family centered model. They are bold and courageous with their unwavering commitment to seeing HD be eradicated. Their energy is infectious to both researchers and families alike. They are worthy of support!

I attended Freeze HD virtually. What a great event to bring awareness.

I’ve never seen a human like carol baird who inspires and comforts her family and friends to care about and be passionate about finding a cure for HD. Carol is persistent in asking donors not only for $, but for their ideas, time, energy, and efforts to help find a cure that will benefit the entire HD community.
She is a comfort to those who are veterans to the HD world as well as a wonderful resource to those new to the community. Many will come to the walk or to the conference as long as carol is there to lead, guide, and comfort and console those who are at all different stages of HD.
Not only is carol an inspiration to others, but she and her wonderful sons grant and Geoffrey care for Carol’s lovely and funny husband Richard, who’s been suffering from HD for many years. It’s been an incredibly difficult journey for most of grant and Geoffrey’s childhood and a heartbreaking time for the family, yet Carol Baird keeps the family healthy and happy as she keeps the hope to find a cure for HD alive and thriving.
She’s an amazing person, board member, wife, mother, friend, and advocate. The world is a better place because of Carol Baird.

Thank you for all that you do for families in my state!

It is very helpful to have access to so many webinars online. I often am unable to attend the live, but I always watch them later.

I called to inquire about testing and I received a lot of information, guidance and compassion.

Our family has found a nextwork of support with our chapter as well as our chapter social worker. We are grateful to have her.

I contacted the social worker and they were able to give me advice on how to help a family friend.

I am so grateful that we have a Center of excellence close to us. We need to continue to support so we can get one near all families. We need them.

As part of the National Youth Alliance I have found a network of young adults who are going through the same things I am.

The webinars produced have been a huge help. All of the topics have been very interesting.

we just recently found out that there is HD in my husbands family. We contacted HDSA and their social worker was great! they answered all of our questions and helped us get in touch with a local social worker who has been extremely helpful.

Great support network and a lot of content available on website.

HDSA pointed me to helpful online support groups as I was unable to attend them in person.

Thank you for your compassion and help as we struggled with the decision to test or not to test.

Than you for keeping us engaged during these trying times.

They have been very helpful, I use their website a lot.

I was able to attend an HDSA National Youth Alliance retreat recently. I was able to share with a group of people that could relate to what I was going through. I am grateful that these retreats exists.

I attended the HDSA convention for the first time ever this summer and I have found a family that gets me. It is great to share with a community that understands exactly what I am going through.

Thank you for everything that you do. We have received so much guidance. My family and I really appreciate it.

This nonprofit is absolutely amazing. I've seen the work they do with patient outreach, scientific research as well as fundraising. Their job in uniting all different kinds of people involved is truly inspiring. The people behind it all are so motivated, friendly and willing to reach out. It's an honor to volunteer for them.

HDSA has been a critical resource for my family. We've benefited from their services that I started volunteering and now sit on the board of the Albany Chapter. I'm proud to work with the local team on fundraising, advocacy, and awareness building.

The organization does great work, very happy that i can volunteer my time.

I have worked with many nonprofits over the years. For the past 3 years I have been diligently working with HDSA. I have been impressed with how professional this organization is run. The heart of HDSA is our members and volunteers and this may be the Biggest Heart I have ever worked with.

This is my favorite charity. They play a critical role in raising awareness and hopefully a cure for Huntington’s.

I am working with HD families from time to time and I am glad to be able to have the HDSA website to connect them to as a resource.

I am very happy with the support i have received recently. I was able to talk with someone who understood what i was going through. They were able to guide me in the right direction on how to get care for my mom.

My family and i are grateful for attending convention for the first time this year. It has brough us hope.

You have a very resourceful website that has helped us find more information about the disease. We appreciate the local resources available, it has allowed us to connect locally.

We are grateful for the support we have received. Connecting us to our local community has been very helpful. Our closest COE has helped us navigate through all of our questions.

Thank you for raising awareness of this disease. People need to have access to as much information as possible and your website is a great resource.

Great resources and continuing education for professionals.

Thank you for adding educational programs for professionals. We have been able to educate our "team" about how to provide better and comprehensive care to our families.

Thank you for offering so many online resources. We have used online support groups and it has been helpful.

Thank you for the hard work that you do. My children now have a network of support that can relate to them.

Great outreach and awareness events to educate the public

HDSA goes above and beyond with advocacy efforts. They are always helping the community have their voice heard.

I attended the convention for the first time this summer and was very pleased with how much information was available to me. thank you so much, keep up the good work!

Thanks to HDSA's help I was able to find help in my area.

I reached out to their help line and was able to get assistance in my area right away.

Thank you for providing so much information. All the literature we have receied has been really helpful.

Thank you for all of the support you offer. I have participated in the new online support groups. It is a very exciting opportunity to be able to connect with other families that are going through this.

Without the HDSA and the NYA, I would have felt all alone in this fight against Huntington's Disease. These organizations brought me closer to others affected and made me really understand the disease so much better. They provide so much hope for our community and do such great things!

HDSA and the NYA have done so much for myself and so many that are affected by HD. Being able to be a part of such an amazing community with so many inspirational individuals affected by HD makes me realize I am not alone, it gives me hope, and pushes me even further in my journey to fight. xoxo

HDSA is a nonprofit organization that takes a grass roots approach to spreading awareness and raising money to deal with different issues that affect the families who affected by this debilitating disease. From the establishment of unique medical facilities that help individuals to understand and address the unique psychological and physical conditions created by the disease to fighting on Capital Hill to have bills passed to get people affect by HD the proper health care at the right time, HDSA and its members are at the forefront of trying to help provide the "hope" and "help" need in the the HD community. I am proud to be a part of it!

I love that they have outreach for young people affected by the condition. I found several other people that were also taking care of their dying parents all while facing the possibility of their own diagnosis. It helped me not to feel so alone, which is invaluable.

The HDSA has changed my life in so many ways. I have been introduced to other great HD organizations through them. I have new found family because of the HD community and all that the HDSA has done for us over the years and I have gained SO much knowledge. Without the HDSA, I would never have found all the love and support I needed to get through the hardships of this disease.

I don't know where I would be without HDSA, they've educated me and at the same time helped me move forward in my time of need.

Thank you HDSA for introducing me to other youth in the HD community me and allowing me to gain great experience as a volunteer.

The HDSA and the NYA have done tremendous things to connect me with others going through similar struggles and to ultimately make my life better.

HDSA has changed my life for the better. This organization has not only provided me with resources and education, but also a FAMILY. In this organization, family truly is everything. I am ever grateful for HDSA and their support of youth across the U.S. through their National Youth Alliance.

At a time in my life, when all seemed hopeless in getting the necessary help for my loved one who is suffering from HD, HDSA was there.
I was at the end of rope, I called HDSA, and started crying on the phone trying to get answers on what to do, where do go from here, and all my questions were not only answered, I was comforted by a wonderful woman. She was reassuring that I wouldn't have to do this alone, HDSA would guide and help me with all our needs.
They were more than just words, HDSA provided me with all the resources I needed.
Without their help, I don't know where my family would be now.
My heartfelt thanks are with all the wonderful people at HDSA. During the hardest time of my life, HDSA helped ease my burden and was there for me.
I am forever grateful to all the wonderful, compassionate, and helpful people that are the HDSA! Thank you for all you do for people with HD and their families!

HDSA is a major platform for individuals who are at risk, have HD or have loved One's who suffer from the disease. I am thankful for HDSA and the awareness this organization raises for the disease, as well as the resources it provides for individuals/families affected by the disease.

Thank you HDSA for all of your support. We appreciate the help and resources.

I have attended education days in my state and i am so grateful for HDSA bringing awareness to people in my community. I have been able to connect with other family members.

I have called HDSA several times and they are always helpful, courteous and compassionate.

Thank you for all that you do for our family, we appreciate all of your help.

HDSA offers families a place where they can find the most up to date information on HD. Often they are the first place a person with HD calls when they learn that HD is in their family. HDSA advocates for the HD community every day.

There is so much incredibly valuable information on the HDSA.org website and on HDSA's social media pages. The HDSA YouTube Channel has everything families need from research news and caregiver tips. HDSA also coordinates excellent community events and support groups from coast to coast.

This is a great non profit fighting for a worthy cause!

I have called the help line to receive information and they have been very knowledgeable. Thank you for all of your help.

This nonprofit needs support. This disease is unknown to most and deserves our attention. These families have generations of unfortunate and almost unimaginable discrimination. It is one of the worst mental and physical disabilities known to man. These families are struggling and need our financial help. Because the families are so mentally affected they are unable to ask for help. PLEASE consider this charity for donations. Google it for more info.

Huntington's Disease is by far the cruelest disease to date. Having said this, having the support of the HDSA is crucial for families on so many levels. THis agency has helped with setting up Doctors appointments, it aids in funding Research , offers support groups in states and cities around the country and gives families HOPE which is all we have right now. HOPE for a future with no Huntington's and a chance for those children at risk to breathe and look forward to their future. I have lost my husband to HD and my 21 year son is symptomatic. Without HDSA I would be lost. Definately the #1 Non Profit around.

A family with 2 aunts and my mother all with HD. Could no ask for a better organization!

I have to tell you, after giving for 15 years to HDSA I was shocked when it came my turn to ask for help. My wife's Mother passed from HD and we gave religiously for 15 years afterward to HDSA. When my wife in turn became diagnosed with HD, I turned to HDSA for assistance. I was asked my name and SSN so they could see how much donating I had done to HDSA, and then only gave me flyers on where to find assistance. I now give to the Hereditary Disease Foundation that is actually searching for a cure, that is their main goal. HDSA helped you die with HD, it doesn't want a cure, please check the numbers in there budget and finances to see what your donated money goes to.

Our family has HD. We have been supported, informed, inspired and been given hope through the Huntington's Disease Society of America. This disease is not as wide spread and widely known as many are, therefore, those of us who have this disease are often at a loss. We are given great hope from HDSA, because of the tireless work they do for fund raising and research to find a cure. HDSA has been working tirelessly for decades to find a cure, and they have done this without the huge public awareness and financial donations many diseases get. As a result of the research they have done, many breakthroughs for other diseases have been found and shared by HDSA. The HD community is a very special community, as we have become very proactive in creating many local fundraising events across the country and around the world to support the continued research for a cure. We are very committed to supporting each other to help us live day to day with this disease.

My family has a history with this devastating disease. Huntington's Disease Society of America has been a godsend. They not only help support, but educate as well. I have used numerous resources provide by HDSA. I truly don't know what I would do without this organization. Thank you to everyone @ HDSA!

HDSA is a truly amazing organization. It provides a sense of clarity and comfort to families affected by HD when things are seemingly spiraling out of control. They provide information and resources we are desperately seeking, and show you that you're not in this alone. They definitely deserve the recognition.

The HD Society is a wonderful organization. Not only do they support those affected by HD, they invest in realistic research and contribute to the HD patient as a whole person, not just the disease. They also provide support for families, caregivers, and the community. The fundraising done for HD is done in realistic, local levels to produce national results. Very pleased overall and there are tons of ways to give.

HDSA has helped families and patients themselves with the devastating effects of HD. They offer wonderful programs for families to help educate caregivers and also support for the patient. They have also offered great programs for the children of HD families to deal with this hereditary gene.

They have made great progress in regard to stopping the HD Gene but so much more needs to be done to help the thousands of people effected. One day before I leave this earth I hope to read they have found a way to stop HD and that treatment can be giving to all the patients and family members that tested positive for the gene.

Best non-profit organization out there. The information they provide is hugely comforting. This disease is not as recognized in the general public, but with HDSA working 24/7 with families and for a cure, we hope to raise more awareness.

Best non-profit doing great work! Feel great about my money going to HDSA!

The service is great for families and patients alike. No matter what question you ask, or what service you need, the agency employees are there to work tirelessly to give you an answer or point you in the right direction for immediate help. Donations are accepted with great gratitude and receipts are issued without fail. Highly recommended for families, caregivers, etc. Whenever I have visited the office, the staff is courteous and helpful.

We have a 36 year old daughter with Huntington's. This non-profit page provides us with comfort and information. There are other HD families out there and this helps us with perspective.

This non-profit is an incredible source for all things Huntington's Disease.

Provides clear and instructive information for patients and their loved ones/care team, as well as building a community for those affected.

Just the information alone and the help put you in touch with others in your area. They help connect you to doctors and people that can help the families. Not to mention the support groups!!!!! My family would be lost with you them!

My son in-law has HD. This affects his entire family who do our best to provide support. The HDSA does a wonderful job of advocating for the needs of HD victims and their families.

The Huntington's Desiese Society of America is a superb organization. I attended parts of the conference in Jacksonville with a family friend. Everyone was welcoming, informative. There was a great talent show and the participants, MC and other volunteers there were passionate and enthusiastic about fighting for their cause and raising money to find a cure. I met kind people at the conference and was invited to attend a support group to get more information and be more aware, as I am a teacher. The people there as well as th group leader were welcoming, kind and generous!

I discovered that my husband had HD five yrs ago . I went to the HDSA web site and was very pleased with all the info I discovered. I have been going to a HD support group ever since. Without having all the info and support that HDSA has to offer I would be more lost.

My brother's partner's (J) mom has HD and it has been heart-breaking to watch it progress over the past few years. J and her brother (& her son) have yet to be tested. Initially I had a hard time understanding why, but the more I have learned, and the more I have talked with J about her concerns, I now get it.
It really breaks my heart to think that any one of them has HD, much less two or all 3 :(
J's whole family is active in HD fundraising and research and I am happy to do what little I can!!!

HDSA helps people withbHD and their families by in many different ways. : support groups, letting us know about all the research going onand being active in getting bills passed in Congress. Jane Kogan has been a tremendous help in preparing our volunteers to advocate for Senate andHouse bills that will redefine SS outdated definitions of HD and get rid of the 24 month waiting period once a person is accepted for disability. Right now many with HD are turned down when they first apply for disability because if the outdated definition of HD. HDSA heps with training and conference calls when putting on a fundraiser like the Walks for Hope.

I am a daughter who's mother was diagnosed with HD, I knew nothing about it unitl I found this organization. It not only answered the billions of questions I had, but also provided with me emotional support from now friends, it gives me a since of security knowing I am not the only person in the world going through this. This organization in a way saved my life.. I was overwhelmed and ready to give up and they would NOT let that happen. For that I will always be truly thankful. This is an organization that helps people in every way possible. Thank you for all you have done and continue to do everyday. I will always be a proud volunteer HDSA.

My brother was diagnosed with HD in 2006. I started working with HDSA in 2009. There is never enough dollars spent on a disease that is so devastating; however, HDSA does so much more. Helping families cope, providing education to not only families but also the medical community, and helping unite us all in the fight against HD. My family has truly been blessed to have found the support we needed thru HDSA.

HDSA worked with me to help me help my clients. Through the HDSA, I further developed HD-specific knowledge within my field. Without the help of HDSA, I would not have been as successful on behalf of my clients.

This community needs help and they are very appreciative of any contribution you can make. A WORTHY CAUSE

This is a organization that is not like the bigger ones with Celebrity endorsements ect... and is much a family secret... But the organization is so great at working together and bringing awareness to the disease.. Getting people involved in clinical trials and educating the public and medical fields. We are fighting hard to find a cure and to save lives.. I am so proud to be a part of HDSA The Organization has everyone with Huntington's Disease and their families best interest at heart.. They have built relationship with Pharmaceutical companies and Center's of Excellence to help reduce the cost of medication and to have specialist that actually know about Huntington's Disease to provide the Utmost care - there are support groups across the country.. They listen to what we need and strive to reach and support more and more people in need.

My husband was diagnosed with Huntington's Disease at age 73 three years ago, and now his sister, nephew, daughter have all been identified as carrying the gene expansion. We have benefited greatly from the educational materials, conferences, and support of HDSA. The amount and depth of information created for the general public just isn't available anywhere else. While a cure, or even a stabilizing therapy has not been identified, as soon as it is, HDSA will let us know. Thanks for all you do.

HD affects only a very small sector of the population, but HDSA helps those fighting the disease feel less alone. It has provided great support for my mother, who relies on its support groups and webinars to receive support and information. Being gene-positive, I rely heavily on HDSA's advocacy to encourage the development of a cure before I face the symptoms of HD down the line.

My daughter has JHD and the people at the Rochester Center of Excellence are the greatest. HDSA has been such a great help. I am at this time organizing a fundraiser to bring awareness to my small town and surrounding areas.

HDSA provides information to people regarding a rare disease with no cure. The public needs this information so they can show their support to this worthwhile cause.

Members of my family have been affected by Huntington's Disease. It is a scary disease with no cure. There is a 50% chace that my sister and I also carry the gene. This organization has been a wonderful resource to our family and friends for the past 12 years. Not only do they provide up to date information, they provide resources for family, friends and care givers. My family is involved in the local support group and participates in the yearly walk to raise money for further research. We appreicate all that this group has to offer.

My husband was diagnosed with Huntington's disease in 2006. He applied for Social Security disability and was denied. I contacted HDSA in the hopes that they could help. Jane Kogan returned my email within 24 hours with contact information to assist me. The person she referred me to was the FIRST and only person to explain to me the reason for my husband's denial. For over 4 years we were lead to believe my husband would receive disability. HDSA has the right people working for them and with them. They understand the emotional toll this disease takes on the entire family affected by HD. Their tireless effort to bring this devastating disease to the forefront of everyone in America is to be commended and rewarded. Trying to get legislation passed in Congress is a daunting feat in the current political climate, but HDSA has accomplished this! If that doesn't deserve recognization, nothing does!

The national organization has been very helpful in providing information and support to HD families, and in providing funds for research on treatments for HD. The Arizona Chapter has organized several retreats in Prescott that have been wonderful experiences, giving HD families from all over Arizona a chance to get together. Our Tucson HD support group is an important resource for us, providing counseling and activities throughout the year. We look forward to our monthly meetings and have enjoyed participating in local fund raising activites. The counselor who runs our meetings, Joan Jervis, visits my wife frequently at home and raises her spirits every time.

The HDSA is an extraordinary organization that helps a small community of patients that would not have the same level of support otherwise.

For its tireless efforts to promote the HD cause in Congress, build awareness among the general public, fund cutting-edge research, and support and educate HD families, I recommend the Huntington's Disease Society of America for the Top-Rated Nonprofits List.

This organization really helps HD families with information, awareness, and funding. It is one of the few organizations that helps at all. This organiation rocks.

As someone with a family member with HD and a volunteer for this organization for several years, I am very pleased with their help for HD patients and families. Since many people do not know about HD, this organization brings awareness and educational information with many Chapters across the US. Through their affiliation with the Centers of Excellence at major medical institutions around the country, HDSA also brings help and resources to people with HD in their communities. My family member goes to a Center of Excellence on the East coast and receives excellent care. The support groups sponsored by HDSA Chapters also give hope and awareness to families who are affected by HD.

when the disease was first discovered in the family, no support systems existed. the manifestation of the disease may cause such shame. as the support system grew, so has education and awareness. the quantity of people at the current support groups is fantastic considering it small start. the society brings hope to families and friends. the attention to the disease is helpful to the patients, families and those at risk.

We need more research to help find a drug that will help people with Huntington's which is such a dipilating disease. Please support the foundation which is full of useful information and keeps us posted with the latest status and updates us on the newest research and information on helping our loved ones with Huntingtons which includes my husband.

I would give 0 stars if that were possible. I have been a donor to the HDSA for years thinking that they were fighting to find a cure for Huntington's disease. they have not done what their mission states and in my opinion they are a fraud and should be investigated by the IRS.

My husband has undiagnosed Huntington's. It runs in his mother's family so the rest of the family recognizes he has it but he is in total denial. One of his aunts who was diagnosed committed suicide so we see no benefit to him to push the issue. Huntington's Disease Socitey of America has been very helpful with the information they provide about the disease, how other people deal with it and just general support for us caregivers. I am especially greatful for their efforts to further awareness and research into this disease. When I have an email fron them I am eager for their latest information.

Huntington's Disease runs in my wife's family. Her Grandfather, Father, Uncle, and Aunt all either are currently suffering from or have passed away from it. She has a 50% chance that the gene has been passed on to her and she will develop symptoms herself. This disease is devastating for the people who have it and it is hard on their families and loved ones. HDSA is a source of constant support, providing education to physicians and communities, lobbying for updated laws and policies, raising funds for research towards a cure, and organizing support groups and resources for HD patients and their families. HDSA is the only organization in America that I'm aware of that focuses on Huntington's disease and we are so grateful for all that they do.

I am gene positive for the disease. I have always been treated with the up most respect in every encounter with this great organization trying to do their best to understand the disease.

My wife died from HD (Huntington's Disease). This organization has helped families like mine in many ways such as funding research to find a cure, providing support to caregivers, and increasing the public awareness of this relatively unknown but terrible disease.

I have learned a lot from the Huntington's Disease Soc. Of America. My family has found the organization to be very caring and helpful. The educational aspect is excellent. Ann, MI

All of the people I have dealt with at HDSA have been caring and understanding. I have attended several conventions and they have been very inspiring. Its so nice to gather so many people who are going through the same issues my family are going through. Thank you for all that you do.

The HDSA is a group of very caring and sympathetic people who are working hard to fund research to find a cure but just as important to support the HD community’s needs. This is the devil of all diseases in that it is terminal, with no cure and only one compound approved to treat a single symptom. HD is the only genetic neurological disease, meaning if you carry the defective gene you have a 50% chance of passing the disease to your children. This forces those at risk into making choices no one should have to deal with on top of their potential spiral into an untimely death. The Society has done a terrific job of surviving the nation’s second worst economy and updating the vision and mission with input from the HD community at large. I have been to many of their charitable functions and have enjoyed them all I am proud to be one of many passionate volunteers working to support our HD community!

I am a mother of three children who are at risk for this disease HD and lost my husband because he battled it for so long. We live in north Carolina. This is a horible disease!! I am only bringing this up becuase it seems like no one else will or has yet but the HDSA needs to be reviewed about their donations and research that they say they are doing for us in the community. They were just looked at there is a problem with the way they say the money is going to. I did support them and did walks but I will not anymore until the truth comes out. More people are asking questions and want to know what is going on with this company who says that they work for us in the HD community. Please I ask that you look into this.

The HDSA is a group of caring and passionate people who are working hard to fund research to find a cure but just as important to support the HD community's needs. This is the devil of all diseases in that it is terminal, with no cure and only one compound approved to treat a single symptom. HD is the only genetic neurological disease, meaning if you carry the defective gene you have a 50% chance of passing the disease to your children. This forces those at risk into making chioces no one should have to deal with on top of their potential spiral into an untimely death. The Society has done a terrific job of surviving the nations second worst economy and updating the vision and mission with input from the HD community at large. I am proud to be one of many passionate volunteers working to support our HD community!

HDSA has been crucial in maintaining my mental, emotional, and physical stability! By attending their yearly conventions, I am able to learn the most recent advances, socialize with those in similar situations and learn from their experiences, and be advised about ways to maintain my physical health. And, we also have FUN! They have been by my side for over 15 years. I've been blessed by HDSA over and over!

As a caregiver for a spouse with Huntington's Disease, I have benefited greatly from the information provided through the HDSA web site. It is so important to have that expert advice about what to do at each stage, and what to expect for the next stage. HDSA has also worked to put in place legislation that would help HD families cope with this devastating disease.

Our family has been involved with HDSA for 3 years. We did not know where to go or what knid of help we needed when we received our diagnosis. When we discovered HDSA, it was like an angel had visited us. We immediately felt like we found long lost family members. The doctors and staff members used kid gloves to guide us along. They provide such personal care and kindness, that makes you feel like you are not alone on this unknown journey. We are involved with a clinical research trial to help find answers to this disease. We have found a wonderful group that meets monthly to catch up on HDSA news and to help each other by sharing our hopes and fears. The HDSA community has so many doctors and scientists working on a cure. They share knowledge about what they are doing, instead of keeping their successes to themselves. This tells us that are truley dedicated to finding a cure to help those affected and to stop the disease for the future. Its funny that it took this awful disease to show us the wonderful people in this world who are dedicated to helping others. Everyone we have met at HDSA has touched us in a way we will never forget. Thank You doesn't evern come close.

My name is Rhonda Murphy, and I live in Nashville, TN. I have Huntington's disease and I have already lost two of my four older brothers to this disease. My two sons Nick and Kevin, have a 50/50 chance of getting this disease which is a fatal disease that will have some time to take me down. I've lost my license and cannot
drive due to the loss of the ability handle a car, remember your sense of
accomplishment when you got your driver’s license well, that is just one of
the things this disease has taken from me. My son Kevin moved home from
college to help me at home. My husband Jeff, works at the State of Tn. in
the TDOT, IT dept. The insurance he has is a very vital to our support. I
have already been approved for my disability. Professionally, I was for
over 25 years, one of the first Female, computer programmers in an
environment where this is a male dominated environment . I love to read and attend the monthly support meeting at the Nashville HDSA, that is facilitated by my niece Melissa Hall Darnell.
My youngest brother lives in Austin, Tx, and he has this disease as well. This picture is of me at the HOPE Walk 2011,
I have attended and supported since my DNA results were read in 2010. Now I am an advocate for my fight for this disease and wonderful families who are also fighting the big fight. Keep moving.
Love from, Rhonda

Amazing group of people who not only want to help families suffering because of this terrible disease, but strive to educate the public and caretakers. They work for a cure and have dedicated their mission to pushing research forward. Knowing that this research is revolutionary not only for HD, but for other related diseases, makes HDSA an easy choice to donate to and volunteer with. Those who have inherited the disease suffer physical, emotion, and financial hardship and HSDA embraces them like family. My father and sister both passed away from this horrific disease. Fortunately, I did not inherit the disease, but I've dedicated my life to helping those with HD. My hope is that they may have a bit easier, even just a little, than what my family endured. We are survivors! And I'm thankful to have HDSA act as a vehicle for my own personal mission!

HDSA is a great organizations that has withstood the test of time in its work with people with HD. It is VERY deserving to receive this credit and has provided advice whenever I have connected with them. For example, Jane Kogan was a great asset to give guidelines on how to interact with our politicians. I will continue to look towards HDSA as a great resource as we take on our own project to facilitate a drug into an human approved clinical trial for people with HD. Sincerely, --Tricia Wempe

Huntington's Disease is one of the most devastating neurological diseases there could be. HD can rob your loved one of everything they have...their bodies and their minds. Emotionally, physically and cognitively, your loved one is transformed into someone you no longer know or recognize. Their abilities to walk, talk, care for themselves independently, reason, learn new things and be an active participant in their own lives is taken away. Most people with HD become symptomatic in their 30's and 40's...at the prime of their lives! The saddest part of all is that each child of an affected parent with HD has a 50 percent chance of inheriting the faulty gene that causes HD. Three generations of ONE family can be affected at one time. It is difficult enough caring for one person with a terminal illness, for which there is NO effective treatment or cure...never mind having more than ONE family member affected at the same time. The emotional, financial, social and medical impact is beyond compare to families affected with or by Huntington's Disease. Fortunately, the Huntington's Disease Society of America is there to offer support, education and HOPE! The Huntington's Disease Society of America has information on every aspect of the disease. They provide books on just about every topic. They run support groups, which is crucial, to not feel so isolated. They offer Education Days to inform the families and general public about the disease, the current research, and where one can find help. The HDSA provides Centers of Excellence throughout the country where the top doctors and researchers of HD provide top notch care for the people with HD, as well as their families. The HDSA helps advocate for the families in regards to many aspects of life, including receiving Social Security and Medicare Benefits. The HDSA also raises money to help fund research for a possible treatment or cure. Huntington's Disease is a very rare disease...only 35,000 Americans have HD. The Huntington's Disease Society of America is a lifeline of hope and knowledge for families affected with and by Huntington's Disease.

Thirty years ago a family member was involved in Tay-Sachs research, the first time I became aware of such devastating degenerative genetic disorders. I am proud to be associated with the tremendous work of the Huntington's Disease Society Of America. I am especially motivated by the motto of their National Youth Alliance: Dedicated to making this the last generation of Huntington's Disease.

HDSA is an excellent resource to get anything related to Huntington's Disease and they are working to help one of the rarest disease which only HD families will appreciate .. Thank you so much

They help to educate and inform so many people about this horrible disease. I don't know what my family would do with out them!

This is a society that really deserves to be heard about for all of their hard work. I watched both my grandmother and mother succumb to this disease. Even when my mother was in the fight of her life (back in the 2000s), no one spoke about this disease. Oftentimes she was mistreated in public because everyone assumed she was a junkie. However, the scariest aspect of it all, was how closed off from the rest of the world it makes you feel. Because of the health implications, even care givers are fearful of speaking about it out loud. This society is a wonderful place where those touched by this disease can come together and we don't have to be silent. It is a resource I wish I'd had when my mother was still alive. They offer creative ways to donate to their society - either through raffles or flower bulbs as Christmas gifts. They also send out regular newsletters that keep everyone up to date on the latest research in the pipeline for HD. They also send out regular profiles of other people and their struggles with HD. Thank you HDSA, for everything that you do.

My wife has Huntington's disease. HDSA has been a priceless asset to both of us. Their support groups are excellent and the organization on a whole is super. Their website couldn't be more helpful and I am very impressed with their organization from a management viewpoint.

It is very important that organizations for Huntington's Disease be recognized and supported, particularly since this is an always fatal "orphan disease" which genetically runs in families, and therefore doesn't have as much money funneled into it as some of the more known diseases. I have lost most of an entire side of my family due to this devastating disease.

HDSA as helped my family a lot in learning more about Huntington's Disease and connecting the community together nationwide.

My childhood friend got married and had two children. Years into the marriage, her husband was diagnosed and has been getting worse continually - he cannot be the dad to their two young children he wanted to be and can't participate in their lives normally due to his Huntington's. Now the youngest child has been diagnosed. Families like theirs need attention to be paid to organizations such as HDSA in order to help them cope and help to find a cure. I know HDSA has been one of the pillars that has kept them going and I thank them for being a support system for them. It's such a little talked about disease that has such devastating effects.

When one of my best friends was diagnosed with Huntington's Disease we were not sure where to turn. His doctor recommended getting in touch with the Huntington's Disease Society of America or HDSA. I believe they are the only group that helps people with Huntington's and their caregivers. The HDSA offered very informative information for my friend Jimmy and his caregivers. For the last 6 years the HDSA has helped me raise money and awareness to battle this deadly disease. As of this time there is no treatment for HD. The HDSA is committed to helping people with HD, their caregivers and to raising money for HD research. When this disease is cured it will because of all the great work that the HDSA has done.

HSDA is a compassionate, thoughtful, profoundly helpful organization. The people there are the overachievers that go above and BEYOND to make you feel safe, loved, cared for and understood. With such a complicated, scary disease that still has very little national support, HSDA continues to fight tooth and nail to be recognized, and to recognize those that go through or are touched by this awful sickness. I am grateful to the people who have devoted their lives to this cause - they are angels and saviors to so many.

It is just wonderful to watch the progress of HDSA from when it developed out from one of it's origins CCHD. The level of organization from fund raising to encouraging scientific research has been remarkable.

HDSA has been an incredible resource for 15 years for my family. They deliver what they promise, are dependable and accountable across the board! I have worked with many non-profits both as a client and board memeber and think HSDA represents among the very best.

I have served as Treasurer for a local chapter of the Huntington's Disease Society of America for over a dozen years. The organization is totally dedicated to find a cure and to improve the quality of life for afflicted persons. I have always been impressed by the dedication of all the individuals I've has the pleasure of working with. They are dedicated and hard working!

HDSA is a wonderful organization. I have a strong family history of Huntington's Disease and I am HD gene positive, so they have been a great source of knowledge. They also plan many events for Huntington's patients and families that are great as well.

My husband has Huntington's Disease. Without the help and support of the HDSA and the local Center of Excellence, he would probably not be alive today. Through the Center of Excellence, he has access to neurologists and psychiatrists that specialize in HD and are able to treat him appropriately. He has also participated in research studies to help better understand the disease and hopefully find a treatment and cure.

I have worked to fundraise money for research for HD and it always amazes me how extensive the collaboration is in this field. The researchers really have good ties to the donating community and are happy to share their work with us in small talks at fundraiser walks as well as at our annual regional conventions. Very few of the other organizations that I have fundraised for tend to have that kind of personal connection with their donors but HDSA really makes me feel like the work that I do for them, whether it be fundraising or advocacy, really makes a difference!

My wife was diagnosed with Huntington's Disease, a horrible neurological degenerative disease, 17 years ago. We've seen her go through many changes, to the point that she is unable to walk, talk, communicate in any way, has severe dementia, is incontinent and a number of other problems. In addition, our two adult children each have a 50% chance of getting this dreadful genetic disease. The ONLY hope for my kids and thousands of others, is that the Huntingtons Disease Society of America receives enough funding and support to find a cure or at least treatment, that will make those suffering or at risk for HD, have hope. I urge you to learn more about HDSA and the work they do. Unfortunately, this is a "quiet" disease that doesn't have a celebrity spokesperson or means to have a significant presence in the public eye. They need your financial support. Thank you.

HDSA is helping raise awreness in communities and offers support to people and familes effeced by this horrible disease. Unless you are personally faced with HD or caring for a loved one with HD, there is no way to make someone understand how inense this disease is. It is passed on 50/50, there are no drugs to slow progression and it robs people of their lives or loved ones lives. We need HDSA to continue these efforts and educate people about the true HD story. I am a 35 year single mother who tested positive. I have two children at risk, my hope for them is treatment and a cure. Please realize the importance of this group.

I have a lifetime friend who is gene positive with Huntington Disease as well as so far her oldest son is also. She has three other children. Who might be too. This organization can keep families updated on the lastest things being done in research and can help them get in touch with much need support groups and services

I volunteer for HDSA all the time and I can honestly say that they are 100% about the cause and helping people affected by Huntington's Disease. HDSA works hard to help those in need and are constantly working on growing as an organization to better themselves and work towards the mission!

I'm a friend of the Cuccinotto family in Illinois. Their family has been has been hit hard with this dreaded disease and they work tirelessly in their fundraising efforts to increase awareness and research for HDSA. I believe this organization should receive the 2012 Top-Rated Award

The staff of the Huntington's Disease Society of America is supportive and incredibly helpful. They do amazing work through their regional offices to help raise awareness and promote education of this devastating disease. Their Faces of HD campaign in May made a huge impact on everyone. As a volunteer for this organization, when planning our Team Hope walk for the past six years their staff - regional and national - came to our aide in so many ways. They assist with organization, ordering and promotion. They also are a positive influence in their communication both with volunteers and with the public. The annual conference is another way they get the message out. The workshops and camaraderie are invaluable. I like the webinars they e-mail out as well. I can log into them on my lunch break at work and get the advice our family needs in a convenient setting. HD is a very difficult disease and affects SO MANY PEOPLE. HDSA is a beacon of hope for our families and it is an honor to work with them as a volunteer. Becky Black, Missouri

While brain-wasting diseases like Alzheimer's and Parkinson's are well-known to the public, most people unaffected by it have never heard of Huntington's Disease. For those who ARE affected by it or whose loved ones are affected by it, this can feel lonely and isolating. HDSA provides a positive, healthy and hopeful place for HD families to go to for hope. HDSA does marvelous work for HD families in many ways: creating a sense of hope with research towards a cure, outreach to families affected by it, and by engaging gene-positive and at-risk people through support groups, fundraisers and access to the latest research information.

HDSA is a great resource for individuals and family members affected by HD.

Imagine having a family member or friend who is forced to face Huntington’s disease, who will slowly lose his/her ability to talk, walk, swallow, event think. or if you are a caring person who is touched at the thought of any human being having to slowly lose his/her ability to stand, to bathe, to hug a loved one, to eat, to reason, to communicate in any way, you will be thankful that HDSA is there to help.

This is a complicated disease, requiring a team of Neurologists, Genetic Counselors, Speech, Occupational and Physical Therapists and Social Workers as a treatment team…all working together and communicating about the total physical, mental, and financial impact on the person affected by HD. This coordination of care is provided by the teams of professionals at HD Centers of Excellence, supported by HDSA.

HDSA is a remarkable organization with a dedicated staff, passionate volunteers, and a growing number of supporters. This group gives HOPE to every person with Huntington’s Disease (HD) and to each family affected by the disease, working tirelessly to provide the family services, education, advocacy and research to provide help for today, hope for tomorrow to the more than 30,000 people diagnosed with HD and the 200,000 at-risk in the United States.

It provides families with education on caregiving for their loved ones and Centers of Excellence for medical care.

HD is a devastating progressive and terminal hereditary, degenerative brain disorder for which there is, at present, no cure. It attacks both the mind and the body, eventually rendering the person totally helpless. HDSA is the organization that battles this disease, supports research, educates caregivers, and provides both the HOPE and the action to win this battle.

Please endorse and support HDSA.

When dealing with a genetic disease where you have a 50% chance of inheriting, it is important for others to realize the importance and impact of HDSD. My entire family has been affected by this terrible disease however HDSD has kept me informed on ways to care and financially support my loved ones. My life would be entirely different. Literally, I would have homeless family members due to the cost of care and "treatment" however HDSD has helped my family find resources to make a better situation out of a horrible diagnosis.

I am new to the Delaware Chapter Board of Directors for HDSA. I feel that HDSA had moved in great strides in helping to educate and care for those suffering and the families of those suffering with Huntington's Disease. We have lost several cousins to this disease and it is a heart breaking demise for humans to struggle with. Please consider HDSA for your top great non-profit causes.

I am the caregiver for my daughter, who has Huntington'sDisease. I was also the caregiver for my husband who passed away, having the disease H.D.S.A. has helped me in living through these terrifying periods. It is very frightening to see the people you love succumb to this horrible disease, but the society educates and give me as much support as possible. I have learned alot and am still learning more. They have or sponsor many fund-raising events. They also have seminars and conventions to help support and educate interested people, with many knowledgeable doctors and researchers. I cannot imagine what affected people of Huntington's Disease would do if there was not the H.D.S.A.

HDSA has been a leading organization in the fight for HD communities and families. With the help of HDSA my dad (diagnosed) has been able to utilize many resources, find doctors in the area that specialize in HD, attend charity events/walks, and as a family, we have been able to utilize these resources as well. The information is up to date, useful, easy to access, and has provided answers to many questions that the HD community has had. I HIGHLY recommend HDSA for the top rated awards, for any monetary assistance available, and for as much recognition as humanly possible.

Great organization! They help with awareness, support, and much more.

My husband has 3 siblings with HD and our daughter is at risk. I feel like HDSA is the only place where I can go to get information, help and just find someone who understands. Even many doctors still have limited knowledge of HD. HDSA is a lifeline to me and many others.

I am a member of a Huntington's Disease family. HD has been in my family for as long as I can remember. My Grandfather had HD. My Mother and three of my Aunts have had HD. I have lost a sister and a cousin and now my brother has HD. My sister and I have tested negative so we are very thankful for that as our family has been spared. My sister has two children who are at risk and my brother has four children. One has tested negative and the other three are at risk. Please help put an end to this disease before it takes any more of our families. Thank you, Linda Dixon Arlington, WA

My family has a history of Huntington's Disease. HD is such an unknown disease and the stigma is difficult to live with and share medical history in a way that people understand. Any disease that effects the brain is extraordinarily difficult to live with and to have in your family. This little known disease needs more funding. In combined efforts with those who are researching for other neurological diseases such as Parkinson's and Alzheimers, so much progress can be made. There is much information about prevention and delaying onset that we need more of. We need this help now in time for us to continue raising our families, and most certainly in time for our children. Please put HDSA in the limelight for its superior work and support. They host events through out the year, the HD Run for the Cure is one I participated in last year. It was well run and well attended. We had a great time as a family and helped raise money and awareness for this disease.

This charity is very important. My family has been plagued with Huntingtons Disease for way to long. We need this charity to help raise money so we can cure this horrible disease!

My half-sister died from Huntington's in 2005.I have seen the horrible effects of this disease.My two nieces have a 50/50 percent chance of getting this disease.Huntington's has been wonderful organization,in education,fundraising,and support for persons whom have this disease. Thank-you,Judy Wallace

My husband has HD. We participate in the Geneva Support Group which has provided exceptional information available to us and other members. We also participate in the annual HD Walk each May. It is well organized and raises much needed money for research and HD families. The IL State Convention also provides information and services to families touched by this devistating disease. This organization provides families with the support and information they need while dealing with this disease. It also provides awareness for the community to help them understand the need for compassion for those affected by HD, and the need for research to find a cure.

HD is a huge part of my family. My Grandfather passed away from the disease a few months ago and many of my family members also carry the gene. Because there is no cure, I really wanted to do something in hopes that one day there would be a cure for this awful disease. I did some research online for a charity. I came across HDSA. I was so pleased to (1) find a NON-PROFIT for HD and (2) a charity that also organizes walks (Team Hope) that was also a NON-PROFIT. I have done other events in the past for different causes that required minimum amounts for fundraising and I was never too sure how much actually went to the cause. With HDSA I know all the money is going right back to the cause. You can even participate without raising any money because support and raising awareness is also important. My family and I have raised money and walked for HDSA every year since learning about the organization and will continue to every year until there is a cure. Being that Huntington’s disease is a family disease, it means a lot that HDSA also gives support to family members/caregivers. It helps knowing that they were and will continue be there for my Grandmother and family during these difficult times. My Grandmother and Grandfather would have celebrated 60 years of marriage just 2 months after his fight with HD ended.

I joyed the Huntington Society when I came aware of that my mom had the disease, from there forward I start to learn about this disease that will affect me, and my family, four years ago I lost my uncle to the disease and see the suffer of my family and learn of more people in my immediate t family to have it. I live in the United State but my family live abroad where people less educated about this disease I found my self learn from this organization to help my family back home. I found this to be so helpful l, informative and I am hoping to follow the foot step's to start such organization back home.

I am on the board of the Huntington's Disease Washington DC Metro Chapter. I became involved a couple of years ago, because I wanted to find a way to share my experience with HD with others. My mom was diagnosed with HD when I was 4 years old. She inherited HD from her mother, but when she was a child she was told her mom had MS. My mom married and had my sister and I, all without the knowledge of 50% chance that she could inherit HD. Her family kept this disease a secret, like so many other families. It has become so important to me to increase awareness about this disease so that others will fund research and support services for those that are affected. Please help us inform others of this horrible disease!

I am thankful for this site. After my dad being diagnosed with Huntington's and then myself, I look forward to my email to keep me in the know regarding differnet aspects of the disease and things going on.

Several years ago my wife was diagnosed with Huntington's Disease. My family was nervous, scared, and very uninformed. Shortly after, we learned of HDSA and attended the national HDSA yearly conference in Oklahoma City, OK. The information that my family came home with was invaluable. Our sons, my wife, and I felt that we now had the education needed to take on this disease and make the best lives we can out of the situation. The "not knowing" and fears were helped to be put to rest. Not only did we learn care taking and special needs options but also learned of new and helpful, ground breaking medications. I belong to the NJ chapter and I see how hard all of the chapters work to raise donations and awareness. The NJ chapter has several patient and family support groups which I have attended to help me cope with my wives ultimately declining condition.

HDSA helps spread the word and provides support for a devastating family disease, Huntington's Disease (HD). They also fund research and disseminate information to cure HD. Please help.

They have useful and uplifting information readily available for those who are affected by this terrible disease.

My mom passed away of HD two years ago. She left behind four kids and a husband of 34 years. My youngest sister was still (graduates 2013) in high school. The challenges we faced with HD were endless. HDSA provided us with resources to help us deal with what was going on, taking care of my mom and the hope that one day all four of us may not have to suffer if a cure is found. This disease is ugly and devistating. HDSA helps you feel like you are'nt alone. Thank you for all you have do and continue to do. PLEASE FIND A CURE!

Family members with Huntington's, other's with the gene. Support, education, a chance to make a difference!!!

The HDSA has helped raise awareness and funds to help those people affected by Huntington's Disease. It has provided both emotional and financial support for those suffering with this terrible disease. With more awareness of HD, I believe that HDSA can get us closer to a cure to end this terrible disease.

I got involved with this group through my wife. Her father passed away some years ago from HD. Her sister is in an assisted living home with HD. I became involved through doing some research about HD. I asked Jane Kogan for some assistance. I have become a very strong advocate in the state of Texas for putting HD in equal treatment with other more notable diseases. I am also in the process of forming a family support group here in central Texas. This is a great group of people to be associated.