Browsing Category

HD Community

Mara Sifry-Platt Shares Her Perspective on Multidisciplinary Team (MDT) For Huntington’s Disease Families

Mara Sifry-Platt is a genetic counselor at HDSA UC Davis Center of Excellence and HDSA Center of Excellence Partner Kaiser Permanente, Northern California. She is an integral part of the Multidisciplinary Care Team (MDT) at the two (2) Huntington’s Disease Society of America Centers of Excellence.

Mara is a huge fan of a Multidisciplinary Care Team to care for Huntington’s disease (HD) patients and families. The core function of a multidisciplinary team (MDT) is to bring together a group of healthcare professionals from different fields in order to determine patients’ treatment plan.

Mara says, “The visits at the HD clinics can be a little long, but the vast majority of people appreciate the whole team approach. It keeps the patient and family from not having the drive to all those different appointments, not having to pay for all those copays separately and not having to repeat their whole story to each team member”.

Mara Sifry-Platt information

We Can Never Lose HOPE…

I’m a Huntington’s disease (HD) advocate, President of the HDSA San Francisco Bay Area Chapter, a blogger and an author. Visit my website https://theresecrutchermarin.com

August 30, 2023 by crutcht

HD Clinical Trials, HD Community

GENERATION HD2-Clinical Trial Open to the Huntington’s Disease Community

The HDSA RESEARCH WEBINAR: The Roche/Genentech GENERATION HD2

Study of Tominersen; a new clinical trial that is now open to folks with Huntington’s disease (HD) who meet the criteria. The webinar is worth watching.

Tominersen is an antisense therapy that acts by reducing the production of all forms of the huntingtin protein (HTT), including its mutated variant (mHTT), which is believed to be the main cause of HD.

Info on the study:

-Adults 25-50 years of age (early stage of HD)

-360 people in the study

-Clinical trial locations will be in 15 countries; more than 1 in US

-16 month treatment period

Go to: http://gene.com/patients/clinical-trial-information to read about the Tominersen study and how to get involved. Or ClinicalTrials.gov or signup for HDTrialFinder

February 22, 2023 by crutcht

HD Community

Huntington’s Disease Education Series Presented by UCSF Center of Excellence

The University of California, San Francisco Center of Excellence will present two FREE Huntington’s Disease Education events on December 7th and 8th.

Click Here To Register

When registering, please put “1” or number of people registering in “Individual Participant” & continue registering. You will receive a zoom link the night(s) before the event.We Can Never Lose HOPE

Author Therese Crutcher-Marin, HD Advocate

I’m a Huntington’s disease advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author. Visit my website and learn about HD: https://theresecrutchermarin.com

December 6, 2022 by crutcht

HD Community

In-Person Huntington’s Disease Events Fosters Hope

There is a lot of excitement in the San Francisco Bay Area Huntington’s Disease (HD) community since the San Jose Team Hope 10K Timed Run & 5K Walk will be an in-person event on June 18, 2022. My family is looking forward to seeing friends, giving hugs and cheering on the runners and walkers on the Los Gatos Creek Trail.

Gathering in solidarity soothes our soul, gives rise to hope and connects us on a level that only HD families can understand. Participants attend the event to help in the fight against HD and raise funds to find a cure/therapy for loved ones/friends struggling with Huntington’s disease, children with Juvenile Huntington’s Disease and for future generations.