HDSA Center of Excellence at Washington University

https://huntingtonsdiseasenews.com//belief-miracles-helps/

Registration is now open for the 2021 HDSA annual convention. It is virtual this year! https://hdsa.org/about-hdsa/annual-convention/

The Huntington’s Disease Society of America Missouri Chapter’s St. Louis Team Hope Walk is gearing up and is in need of SPONSORS! (And walkers!) Team Hope Walks are the largest fundraisers of the year for HDSA and bring a lot of visibility to the community. The goal for this year’s St. Louis walk is a modest $51,000. We know that the two weeks has been difficult for the HD community. I hope we can all harness the disappointment by coming together (in person and virtually) t...o continue the mission and programs of HDSA and rebuild our sense of hope. Please ask your contacts, employers, and friends if they will consider sponsoring this year’s walk. Sponsorships start as low as $100! You can obtain the sponsorship form by emailing [email protected]. If they can’t sponsor but still want to help, there is also a need for auction items, whether a basket or other item. (And don't forget to create, join, or support a team!). Here is the link! https://missouri.hdsa.org/about/st-louis-team-hope-walk

Way to go, Springfield MO

https://blog.ssa.gov/new-option-for-submitting-your-disab/

Updates from day 1 of the Huntington Study Group Annual meeting. There is still time to register for the FREE virtual family day on Saturday, October 31 (https://huntingtonstudygroup.org/about/our-annual-meeting/) https://en.hdbuzz.net/295

New study opportunity! Please consider participating in this novel project - it involves just one study visit of up to 90 minutes! (Updated with direct contact information for the study coordinator)

The European HD network is offering a webinar on exercise and HD on November 4. Please make sure you adjust for the correct time zone if you register! (Time listed is in Central European Time) http://eurohuntington.org//living-well-exercise-and-hunt/

Treatment for neurological disorder could be repurposed for Huntington’s disease patients While developing a drug called branaplam for patients with SMA, the pharmaceutical company Novartis discovered that it could hold promise for people with HD. The FDA has granted a special status called Orphan Drug Designation. https://en.hdbuzz.net/294

THURSDAY, OCTOBER 22ND - 1PM Central TELEMEDICINE AND HUNTINGTON'S DISEASE THE PAST, THE PRESENT AND THE FUTURE The COVID-19 pandemic made all of our HDSA Centers of Excellence reconsider the delivery of healthcare to protect the safety of their patients and healthcare professionals. In this webinar, Dr. Erin Furr Stimming and her team at the HDSA Center of Excellence at the University of Texas Health Science Center at Houston will share their telemedicine experience during t...he pandemic and will introduce practical information to increase the understanding about telemedicine, its different uses, challenges and opportunities for improvement in the near future. https://hdsa-org.zoom.us//regist/WN_cVI8MKuhQuCYhGuEAv8MRw

VIRTUAL NATIONAL YOUTH ALLIANCE RETREAT Join us for a virtual NYA retreat weekend on November 14th! Just like our in-person retreats, these are open to folks 12-29 who are in any way impacted by HD. That means if you're gene positive, have JHD, gene negative, at risk, not at risk but in an HD family, a boyfriend, girlfriend or partner of a person with HD in their family, or a friend of someone with HD in their family, you're welcome to join us for a weekend of connection and collaboration. For more information or to register: https://fs22.formsite.com/hdsa/3cdcjhk2lu/index.html

https://caregiver.com/articles/im-fine-thanks/

https://huntingtonsdiseasenews.com//mentally-preparing-ge/

It's Medicare open enrollment time! Open enrollment runs from Oct 15-Dec 7. Tis is your opportunity every year to make changes to your coverage. At minimum, if you have a Part D (drug coverage) plan, you should take this opportunity every year to review if next year this plan will still provide the best coverage for you. Not only could your medications have changed over the year, the plans themselves can change from year to year, leaving your current plan less than ideal f...or next year. Below is a video from Medicare about open enrollment. If you need assistance with evaluating your Part D plan, feel free to contact our office and reach out to the social worker, Stacey Barton. https://www.medicare.gov//medicare-open-enrollment-get-rea Here is the link for the 2021 drug and managed care plans: https://www.medicare.gov/plan-compare/ #/?lang=en&year=2020

The European HD Network is offering a webinar on Coping with Cognitive Changes in HD. You can find out more and register here. (Make sure you convert for time zone! 7:00pm CET is 12:00 central time in the US!). http://eurohuntington.org//coping-with-cognitive-changes/