• Welcome to AlpineZone, the largest online community of skiers and snowboarders in the Northeast!

    You may have to REGISTER before you can post. Registering is FREE, gets rid of the majority of advertisements, and lets you participate in giveaways and other AlpineZone events!

I retureing frim ski

ScottySkis

Well-known member
Joined
Jan 16, 2011
Messages
12,158
Points
48
Location
Middletown NY
HDSA Applauds Energy and Commerce Committee for Highlighting Burden of #HuntingtonsDisease, Reiterates Call to Pass Bipartisan #HDParityAct

Washington, DC (July 29, 2021) – The Huntington’s Disease Society of America (HDSA) applauds the House Energy and Commerce Subcommittee on Health for holding a vitally important hearing today that will spotlight Huntington’s disease (HD) — a rare, inherited, neurodegenerative disease whose patients are uniquely disenfranchised by the current health care system.

READ FULL PRESS RELEASE: https://hdsa.org/news/hdsa-applauds...erates-call-to-pass-bipartisan-hd-parity-act/

#LetsTalkAboutHD #HDSAFamily
 

ScottySkis

Well-known member
Joined
Jan 16, 2011
Messages
12,158
Points
48
Location
Middletown NY

ScottySkis

Well-known member
Joined
Jan 16, 2011
Messages
12,158
Points
48
Location
Middletown NY
Great news from Huntington New medicine approved by FDA recently to slow down completely stop Huntington progressive:


 

ScottySkis

Well-known member
Joined
Jan 16, 2011
Messages
12,158
Points
48
Location
Middletown NY
New medicine for Huntington D being accepted for patients to use according to this link below
I plan on ask about it at my NYC appointment on Fri:
KINECT-HD2 is an open-label study of valbenazine for chorea in #HuntingtonsDisease that is currently recruiting participants in the USA & Canada.

Visit HDSA’s HD Trialfinder (hdtrialfinder.org) or the study website: http://KINECT-HD2.org.

#LetsTalkAboutHD #HDSAFamily
 

ScottySkis

Well-known member
Joined
Jan 16, 2011
Messages
12,158
Points
48
Location
Middletown NY
Tomorrow Huntington disease appointment in NYC at Columbia hospital Huntington clinic use to once a year but since covid they had delayed it about year in half.
I going to ask them about trails and new medicine and getting on them
My aunt is going take me like every year
I looking forward to this
Asking also about medicine that might keep me cooler
 

ScottySkis

Well-known member
Joined
Jan 16, 2011
Messages
12,158
Points
48
Location
Middletown NY
Huntington disease medicine update: ""After the tominersen flop, Roche is looking at this Huntington’s pact a little differently. The current science says that mammalian adult neurons cannot be replaced, meaning that most R&D for brain diseases tend to focus on slowing disease progress. NeuExcell, however, “may have unlocked the method for regenerating neural tissue,” the biotech contends.
It sees its neuroregenerative gene therapy platform as the key to this, building around transcription-factor-based trans-differentiation tech. The platform seeks to reprogram endogenous glial cells like astrocytes, which surround neurons and are often reactive after neurons are injured or die, into functional new neurons."

 
Top