2024년 8월 7일, 美 최대 루게릭병 환우단체 I AM ALS(이하 IAA)는 미국 전역의 신경퇴행성질환 단체를 규합하여 신속한 치료제 개발과 규제 기관의 유연한 대책을 촉구하는 '큐어 콜렉티브(the Cure Collective)'의 출범을 알렸습니다.

코아스템켐온(주)는 세계 최초 루게릭병 줄기세포치료제 '뉴로나타-알'을 개발하는 바이오회사로서 미국 FDA 임상 3상이 승인된 2020년부터 IAA와 긴밀히 접촉해 오고 있었습니다. 코아스템켐온(주)는 한미 동시 임상 3상이 종료되는 2024년을 맞이해 IAA가 새로이 출범하는 '큐어 콜렉티브'에 공식후원사로 참여하게 되었습니다.

관련기사: [이데일리] 코아스템켐온, 美진출 대비...美최대 루게릭병 단체 공식후원사로

I AM ALS 공식 홈페이지: www.iamals.org

I AM ALS 다큐멘터리: For Love & Life: No Ordinary Campaign

 

<I AM ALS '더 큐어 콜렉티브' 출범 선언 전문>

WASHINGTON, Aug. 7, 2024 /PRNewswire/ -- I AM ALS announced today the launch of the Cures Collective, a neurodegenerative condition coalition. This group of advocates and partner organizations will focus on filling gaps, strengthening collective power, and increasing shared effectiveness as we all focus on ending neurodegenerative diseases (NDs).

The World Health Organization estimates that 1 in 4 people are likely to be diagnosed with a neurodegenerative disease, and that they will be the second leading cause of death in developed countries by 2040. Given this urgency and I AM ALS' success as a community convener and change maker, the organization launched a collaborative of organizations and advocates referred to as the Cures Collective. Its inaugural Steering Committee includes organizations Les Turner ALS Foundation, PD Avengers, The Hummingbird Fund, Hop On A Cure, as well as leading advocates Sharon Hall, Jenny Fortner, and Dr. Jinsy Andrews. More than 32 organizational representatives and advocates across Amyotrophic Lateral Sclerosis (ALS), Parkinson's disease, and Frontotemporal Dementia (FTD) have signed on so far, and membership is currently expanding to include representatives from Multiple Sclerosis (MS), Alzheimer's disease, and other conditions.

The World Health Organization estimates that 1 in 4 people are likely to be diagnosed with a neurodegenerative disease, and that they will be the second leading cause of death in developed countries by 2040. Given this urgency and I AM ALS' success as a community convener and change maker, the organization launched a collaborative of organizations and advocates referred to as the Cures Collective. Its inaugural Steering Committee includes organizations Les Turner ALS Foundation, PD Avengers, The Hummingbird Fund, Hop On A Cure, as well as leading advocates Sharon Hall, Jenny Fortner, and Dr. Jinsy Andrews. More than 32 organizational representatives and advocates across Amyotrophic Lateral Sclerosis (ALS), Parkinson's disease, and Frontotemporal Dementia (FTD) have signed on so far, and membership is currently expanding to include representatives from Multiple Sclerosis (MS), Alzheimer's disease, and other conditions.

"ALS, Parkinsons, FTD, Alzheimers, MS, and other neurodegenerative diseases are all connected in both science and community power. It is our duty to ensure we are working together, sharing learnings, and building on each other's successes for quicker results. We believe that collective action will improve awareness, increase progress, and accelerate treatments and cures for all impacted," said I AM ALS CEO Andrea Goodman.

Following a survey to analyze each organization's programmatic foci as well as insights on shared goals, 23 Cures Collective members met in-person to prioritize opportunities for impactful collaboration. A clear need for neurodegenerative disease awareness emerged, with an opportunity to mobilize community together, create more advocacy power, and a cycle of active and sustained collaboration. The Steering Committee will continue to move forward a strategic plan that mirrors this need and move forward next steps in growing knowledge and awareness of neurodegenerative disease as well as movement growth.

We are grateful to our inaugural sponsors, Mitsubishi Tanabe Pharmaceuticals and CorestemChemon, for supporting this crucial work to drive progress for the neurodegenerative field.

About I AM ALS
I AM ALS is a patient-centric movement revolutionizing how to end disease. The nonprofit provides critical support and resources to people with ALS, caregivers, and loved ones. We empower advocates to raise awareness and lead the movement against ALS in driving the development of treatments and cures. Founded in 2019 by husband and wife team Brian Wallach and Sandra Abrevaya, I AM ALS was born out of their desire to rewrite the ALS story for Brian and the tens of thousands of other people with ALS. Learn more at iamals.org.