Huntington’s Disease

Like other movement disorders that PMDAlliance supports and provides services to, HD has no cure.  A complex disease that is dominantly inherited,  HD is felt by an entire family system as it often directly impacts multiple family members.  Like other programs PMDAlliance provides, our HD services are designed to attend to the whole support system.

Our HD Programs:

Spotlight on HD™ – PMDAlliance believes that information is power.  While HD can result in a feeling of loss of power over life, we strive to ensure you have all the power available to you.  Our Spotlight on HD™ series includes a mini-educational conference with a movement disorder specialist as well as an additional therapist such as a physical, occupational, or speech therapists.  The conference offers a deep dive into new treatments, therapies, and research about HD in an informal, interactive session so you can engage with the doctors as well as other attendees.

In Sync! Support Group Leader Conference & Consortium™ – PMDAlliance provides support group leaders with the support they need to grow their groups, manage group dynamics, build succession planning, and network with other group leaders.  This conference, held each summer in Phoenix, is a time to network with peers, share information, learn, and get revitalized.

See Me™ Virtual Support Groups –  Offered in partnership with the HD Support & Care Network (HDSCN), See Me™ virtual support groups utilize the online platform that PMDAlliance utilizes to host live video support groups.  These online support groups enable people – regardless of where they’re located; no matter if they can’t travel or leave the house; or if local resources aren’t available – to engage with others through facilitated support group meetings.  HDSCN possesses extensive expertise in HD Support Group development and facilitation, with seasoned professional.

Move It ™ Online Streaming Exercise Program:   Move It ™ utilizes PMDAlliance’s online live streaming platform to provide real-time exercise that can be done at home.  Whether you’re a person with HD, care partner, or family member – Move It ™ offers you an opportunity to be part of exercise classes, regardless of where you live!

20’s – 30’s HD Group™ Virtual Support Group –  Offered in partnership with the HD Support & Care Network (HDSCN), the 20’s to 30’s™ HD Group – virtual support groups utilize the online platform that PMDAlliance utilizes to host live video support groups.  These online support groups enable people in their 20’s and 30’s – regardless of where they’re located; no matter if they can’t travel or leave the house; or if local resources aren’t available – to engage with others through facilitated support group meetings.  HDSCN possesses extensive expertise in HD Support Group development and facilitation, with seasoned professional.

Meet our partners:

The HD Support & Care Network (HDSCN) and PMDAlliance are partnering to bring you conferences, educational events and online support groups.

HDSCN’s mission is to help HD families find the best possible support services, care professionals and community services for their HD loved ones. In some cases, children are affected with juvenile Huntington’s disease. Our beloved JHD children require much more attention to support and care. HD Support & Care Network is here to help.

To visit HD Support & Care Network’s website CLICK HERE

 

 

 

Huntington Disease Society of America (HDSA).  HD Support Groups are available in Tucson and Phoenix monthly.  For information about HDSA support group meetings and times please contact:   Tucson – Marjorie Dewald(520) 306-1624. Phoenix  – Marilyn Shepherd, 602-222-9312

Support group meetings:

Thursday: Third Monday of the month from 6pm-8pm.  St. Joseph’s Hospital, Conference Rooms 4 & 5, access by the cafeteria patio

Tucson:  Third Sunday of the month, 2 to 4 p.m., at Devon Gables Health Care. 6150 East Grant Road

To visit the HDSA website CLICK HERE.

If you would like to be added to our HD mailing and E-Mail lists, are interested in an online support group, or have questions about HD services, please complete the form below.  

Thank you

See Me™ Virtual Support Group!

Wednesdays, 12noon PST

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Are you a person that is 20 or 30 years old with Huntington’s?  This group is just for you! 

Click below to learn more.

Learn more about See Me! HD Support Groups for Care Partners 

Are you looking for a support group for men by men?  This group is just for you!