Happy Holidays!
2025 HDSA Disability Recap
As the winter holidays approach, there’s much to be grateful for in HDSA and the Disability Program. Our support has reached all types of people impacted by HD, including families, social workers, advocates, lawyers, and medical professionals.
2025 Highlights
Close to 1,100 people worked with the disability program, getting insight for complex cases and navigating the disability process. This year, Allison worked directly with hundreds of families to answer questions, develop action plans, and provide ongoing support. The blog reached a wider audience, and over 220 people used AskAllison to ask personalized questions. Most importantly, a social work intern joined the team for the first time!
With great enthusiasm, the 40th Annual HDSA Convention gathered remote and in-person participants in Indianapolis. You can revisit the video playlist that includes 15 presentations on topics from Optimizing Sleep and Advanced Care Planning, to explaining outcomes from Clinical Trials.
Additionally, we updated 10 Tips for Navigating Social Security Disability, with the reminder that clinical trials do not count as medical records. This means benefit applicants need a primary healthcare provider and holistic care, and individuals with HD need a specialized neurologist. The 2025 Results of the “HDSA HD Symptoms and Treatment Impact Survey” indicated that mental health symptoms like depression, anxiety, memory, and concentration were the biggest concerns for patients, regardless of HD stage.
HDSA organized a webinar featuring Dr. Sarah Tabrizi and Dr. Walid Abi-Saab, discussing what the AMT-130 News means for the HD community, and a follow-up Q&A with staff. We reported on the regulatory update from uniQure following its potential setbacks with the FDA. We maintain hope for the continued development of HD treatments.
Social Security Holiday Hours
All Social Security Administration (SSA) offices are closed on federal holidays, including Christmas Day December 25 and New Year’s Day January 1. Since these holidays each fall on a Thursday, many employees take Fridays off or plan vacations for the end of the year. If you have a disability claim pending and want to check its status or ask questions, call your local office earlier rather than later.
Many questions can be answered 24/7 with information available on the Social Security Administration website. If you are receiving Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI), preview the benefit payment schedule for 2026. You can also log in to the SSA website to see your personal benefit payment schedule.
Additional Supports
The HDSA disability team will be out of the office for the holidays (Dec. 20- Jan. 5). The holidays can be a difficult time for many families. If you need support and services while HDSA is closed there are other wonderful resource. With this in mind, start with a search tool like the federal eldercare locator to find an Aging & Disability Resource Center near you. Often, elder services overlap with disability services. Plus, a growing number of organizations utilize the No Wrong Door model to ensure seamless support for accessing services.
For a more customized experience, in Google (or your preferred search engine) the key phrase “ADRC locator” with your state name. This will bring up a more relevant locator tool, such as the Texas ADRC Locator, California ADRC Locator, Florida ADRC map, New York Connects, or the Wisconsin ADRC Locator. You can also use the Health Resources and Services Administration tool to search nearby Health Centers and their available programs, or Dial 211 for essential community services.
Contact Us
If you have questions, you can always Ask Allison!
