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has been a tremendous help in preparing our volunteers to advocate for Senate andHouse bills that will redefine SS outdated definitions of HD and get rid of the 24 month waiting period once a person is accepted for disability. Right now many with HD are turned down when they first apply for disability because if the outdated definition of HD.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.
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!