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.
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.