SHARE:  

Summer 2024


Healey & AMG Center for ALS is paving the way in Expanding Access to Investigational Drugs

At the Sean M. Healey & AMG Center for ALS, we are committed to providing people with ALS who are not eligible for clinical trials access to experimental therapies. Across the country, Expanded Access Protocol (EAP) programs are creating new avenues of hope for those living with the disease, and providing valuable research information that is bringing us closer to a cure. The introduction and expansion of these programs represent a significant step forward in our collective fight against ALS.


Together, as a community, we continue to push the boundaries of what is possible in ALS research and treatment.

 

See the map of participating sites here.


For more information about EAPs, including how to explore potential options, visit our website and join our Expanded Access Webinars.

EAP Progress to Date

Expanded Access Webinars

The Healey & AMG Center hosts public Q&A webinars for the ALS community. Join us at 5:00-5:30 pm EST on the second Thursday of each month to discuss news and updates about Expanded Access, ask questions, and hear from doctors and industry professionals at MGH and beyond

This month, Suma Babu, M.B.B.S., M.P.H., was joined by guest speakers Dr. Namita Goyal from the University of California Irvine and Amanda Stevens from the axeALS Foundation. The team discussed collaborative efforts to build more EAP programs and opportunities throughout the U.S. Watch the webinar below.

Upcoming Webinars


  • Thursday, September 12th, 5:00 pm EST: Monthly EAP Discussion featuring Dr. Suma Babu (MGH)


  • Thursday, October 10th, 5:00 pm EST: Monthly EAP Discussion featuring Prilenia Therapeutics


To register for future webinars and view past recordings, visit our website

Latest News from the EAP Program

Acceleration Centers of Enrollment Initiative Launch


We are thrilled to announce the launch of the Acceleration Centers of Enrollment (ACE) initiative. This initiative aims to accelerate enrollment and operational improvements in ALS clinic research, including both clinical trials and expanded access.


Read More

Actively Enrolling Opportunities


Pridopidine EAP


Pridopidine is a highly selective Sigma-1 receptor agonist developed by Prilenia for the treatment of neurodegenerative and neurodevelopmental disorders. We are currently enrolling participants for this EAP, with several sites activated.


Download the Pridopidine EAP brochure


View the Pridopidine EAP on ClinicalTrials.gov


Watch a webinar about the science behind Pridopidine 


RAPA-501 EAP


RAPA-501 is an epigenetically reprogrammed autologous cell therapy aimed at reducing inflammation and slowing the progression of ALS. RAPA-501 cells are manufactured ex-vivo to attain dual TREG/Th2 anti-inflammatory activity and a T-stem phenotype that permits T cell therapy without conditioning chemotherapy.


View the RAPA-501 EAP on ClinicalTrials.gov


Watch a webinar about the science behind RAPA-501

In the Community

Ride to Endure


After caring for his uncle who had ALS, Miron Golfman an ultra-endurance athlete, was motivated to raise awareness and funds for ALS by taking on extreme physical challenges in honor of those who can’t. The Ride to Endure film follows Miron's journey along the 1,600-mile Baja Divide route in Mexico to raise funds and awareness for the ALS community. Since the Baja Divide attempt in January of 2022, Miron has cycled the 1,000-mile Iditarod Trail in Alaska in March 2023 & 2024 raising funds for the Sean M. Healey & AMG Center at Mass General. The Ride to Endure Documentary primiered at the Greenpoint Film Festival in Brooklyn, NY on August 8th.


 Watch the trailer here.

Lou Gehrig Day


Major League Baseball Commissioner’s Office, in partnership with the Lou Gehrig Day Committee, selected the Healey & AMG Center for ALS as the beneficiary of their 2024 Lou Gehrig Day fundraising efforts. This year, $60,000 in proceeds from the MLB’s online auction and funds raised through the Lou Gehrig Day Donation link benefited the EAP program.

 

Pictured: Staff from the Healey & AMG Center for ALS at Fenway Park in Boston on Lou Gehrig Day

Latest Publications

Multicenter Expanded Access Program for Access to Investigational Products for Amyotrophic Lateral Sclerosis


Neel D, Baselga-Garriga C, Benson M, Keegan M, Chase M, D'Agostino D, Drake K, Hagar J, Hasenoehrl M, Kulesa-Kelley J, Leite A, Mohapatra S, Portaro S, Pothier L, Rosenthal J, Sherman A, Yu H, McCaffrey A, Ho D, Luppino S, Bedlack R, Heitzman D, Ajroud-Driss S, Katz J, Felice K, Whitaker C, Ladha S, Alameda G, Locatelli E, Qureshi I, Hotchkin M, Hayden M, Cudkowicz M, Babu S, Berry J, Paganoni S. Multicenter expanded access program for access to investigational products for amyotrophic lateral sclerosis. Muscle & Nerve. 2024 June 6. doi: 10.1002/mus.28169.

 

Read the full article


View the full list of publications from the Healey & AMG Center for ALS here

For more information about the Sean M. Healey & AMG Center for ALS visit our website