12.8.20 Big Day! Huge Day!

Past, Present, Future: The Journey to Advance Innovations in ALS

Sponsored by

The renowned faculty will take us on a journey through time as they discuss how innovation has paved the way toward even greater discoveries to come.

Highlights of the program include:
PAST: Evolution of ALS diagnostic criteria and creation of a toolkit that can be utilized in clinical trials to tailor patient identification and evaluation

PRESENT: The current state of genetics and biomarker research in ALS, including lessons learned from past clinical trials

FUTURE: A vision for precision medicine in ALS that utilizes advances in diagnostic approaches and biomarkers to classify patient subphenotypes more accurately

At the end of the program, you will have an opportunity to submit your questions during a live Q&A session moderated by Dr Angela Genge.

It was a good start to the week’s sessions. Personally, I prefer the debate format and being in person but happy to be present. We had an impromptu zoom chat with some of the patient fellows and that session was informative and entertaining. I’ll get something together on this year’s fellows, they are awesome.

Late breaking news as posted by I Am ALS, “Your advocacy is making hope real. Together we asked the House to stand with the ALS community and they delivered. House Congressional champions voted to bring dignity to those impacted by ALS today just like their colleagues in the Senate. Just one last step to make S.578 real.”

5.15.18
3.6.19
June 2019

I’ve gotten to be a patient advocate in DC three different times now. The major ask for our meetings has always included gaining support for the bill that passed through the House today waiving the 5 month waiting period for SSDI benefits. Read more about this enormous victory, here.

2 thoughts on “12.8.20 Big Day! Huge Day!

  1. Good work Sunny. I really found the 3rd presentation, by C Ingre, interesting and hopeful.

    “see you” during today and next 2 days

    Cheers

    Bruce Virgo Edinburgh EH10 7AU Sent from Mail for Windows 10

    Liked by 1 person

  2. Dear Sunny,

    Fellow Texan with ALS here and I just want to thank you for all your tremendous efforts and accomplishments for ALS. After a year of symptoms, I got my formal diagnosis of bulbar onset ALS June 17th of this year at the San Antonio ALS clinic. I started my process with social security and because of the 5 month rule Medicare just started for me on Nov 1. While I was grateful it happened faster then most, I’m so happy for all who follow that they will be getting assistance immediately. You’ve been a major inspiration to me from the beginning of my ALS journey and I thank you for your heroic works and your inspiring shinning light.

    Regards, Greg

    Sent from my iPhone

    >

    Like

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