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Sean M. Healey & AMG Center for ALS
Fall 2024 Newsletter
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Greetings from the Sean M. Healey & AMG Center for ALS, | |
As I look back over the impressive progress made in ALS research and care this year, I am thankful for the many people who contribute their unique talents to our efforts to improve care and find cures for ALS.
Together we are making inroads in repair and regeneration – for the first time, making exciting, early progress in our ability to return movement; restoring important proteins needed for neuronal regeneration; and screening molecules to identify FDA drugs approved for other uses and new molecules that may be effective in ALS.
The generosity of our donors supports inquisitive, determined scientists who combine their scientific expertise in collaborative scientific studies, elevating the research and amplifying the impact.
As our supportive community of ALS champions grows, we continue to evaluate promising compounds in our HEALEY ALS Platform Trial, expand access to experimental therapies for people living with ALS, and build out Centers of Excellence to ensure every individual with ALS can participate in a clinical trial without delay.
We are thankful for the community members who rally together with so many events that support our work and continue to raise awareness around ALS and the need for funding and speed.
Wishing you a safe and joyful holiday season as we look forward to a 2025 full of new discoveries and exciting advances.
Warmly,
Merit Cudkowicz, M.D.
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At the Healey & AMG Center for ALS, our patients are our priority. Our work is shaping the landscape of ALS treatment and understanding, and we are excited to share the latest news from our center with you. |
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Healey & AMG Center Awards Gupta Family Endowed Prize, Lalji & Family Student Scholar Award at NEALS Consortium Annual Meeting
The Healey & AMG Center for ALS recently awarded the Gupta Family Endowed Prize for Innovation in ALS Care to Team Gleason, as well as the Drs. Ayeez & Shelena Lalji & Family Student Scholar for Repair and Regenerative Mechanisms Award to Anushka Sanyal.
Read the full announcements
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In 2018, former Atlanta Falcons Linebacker Tim Green, in partnership with the Healey & AMG Center, founded Tackle ALS following Green's own diagnosis. Tackle ALS supports the acceleration of research and innovative trial approaches to identify effective therapies for the disease. Season 1 of the partnership resulted in nearly $7 million raised for the HEALEY ALS Platform Trial, allowing for the enrollment of over 1,300 participants across 72 sites in the U.S.
Tackle ALS Season 2 is ongoing, with almost $2 million raised so far. Funds raised during Season 2 will directly go towards ongoing repair and regeneration research at the Healey & AMG Center and our collaborators. Repair and regeneration research aims to comprehensively understand the root cause of ALS and its potential subtypes.
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On October 23rd, Merit Cudkowicz, M.D., MS.C. was featured on Tim Green's podcast Nothing Left Unsaid, and shared exciting developments in treatment approaches, including gene therapies and the latest clinical trials aimed at targeting the root causes of ALS. Listen wherever you get your podcasts or watch the interview on YouTube here.
To learn more about Tackle ALS, visit the website
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Double Your Impact with a Gift To Tackle ALS!
Now through the end of the year, gifts made to Tackle ALS and Team Filchock will be matched dollar for dollar! Tim Green will be matching all gifts to Tackle ALS up to $100K and Steve Filchock will be matching all gifts to Team Filchock up to $100K.
To learn more about Tackle ALS and donate towards the match, visit the website.
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Healey & AMG Center for ALS Releases Call for 2025 ALS Scholars in Therapeutics
The Healey & AMG Center for ALS in partnership with ALS Finding a Cure and FightMND issued the 2025 request for applications for the ALS Scholars in Therapeutics program. The program empowers young investigators to learn how to develop new treatments for people living with ALS. This two-year program is designed to engage clinician-scientists and post-doctoral fellows to gain training and experience in therapy development for ALS at their home institution with an optional industry experience in year two.
Learn more and view past awardees here
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From the Bench
The Mass General Institute for Neurodegenerative Disease (MIND) is an open laboratory space where researchers focusing on a particular neurodegenerative disease – Alzheimer’s, Parkinson’s, or ALS – share ideas and find common connections, accelerating discoveries and therapeutic development across all of these diseases.
This month, we visited the lab of Dr. Mark Albers.
Read More
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HEALEY ALS Platform Trial & Expanded Access | |
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HEALEY ALS Platform Trial
The HEALEY ALS Platform Trial is a multicenter, double-blind, placebo-controlled, perpetual, adaptive platform trial testing multiple investigational products in parallel.
Results of the first five regimens (investigational products) have previously been shared. Two of the five are proceeding to planning for phase 3 testing (regimens C and D). We anticipate results of Regimen F and G soon after database lock. We are working with several new companies to launch new regimens in 2025.
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Retiring Samples and Data | |
As we progress with the HEALEY ALS Platform Trial and look to future regimens, placebo data from the first five regimens (regimens A-E) will retire due to changes made in the Master Protocol. Researchers may request HEALEY Placebo data, which will be deposited in PRO-ACT, the world's largest database of participants in ALS trials. Biosamples will also be available for sharing with non-profit entities. We look forward to this next phase in 2025, and encourage you to register for our community webinar series to stay up to date with the latest news from the trial. | | |
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Expanding Access to Experimental Therapies
We are committed to ensuring individuals living with ALS across the U.S., who may not be eligible for clinical trials can access investigational products. Visit our EAP webpages to learn more about Expanded Access.
For the latest updates on Expanded Access, read our EAP newsletter
HEALEY ALS Platform Trial & EAP Webinar Series
Join us on Thursday, December 12th at 5 pm EST to hear the latest expanded access protocol updates.
Register
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The dedicated efforts of physicians and researchers at the Healey & AMG Center have led to significant breakthroughs in the fight against ALS. Publications are the result of rigorous investigation and research that offer valuable insights into the nature of this disease.
See the full list of publications on our website
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The success of the Healey & AMG Center for ALS would not be possible without the valuable contributions from the ALS community.
Together, we're making waves of change and moving closer to a future without ALS.
Visit our Community Support page for information about upcoming and past campaigns.
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The Daniella Lipper ALS House Call and PACT Programs | |
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On November 13, we celebrated the EGL Foundation’s generous gift to endow the Daniella Lipper ALS House Call Program and PACT program, ensuring these two unique programs continue to be available at no charge to our Massachusetts ALS families, and providing a model that can be replicated at other ALS clinics across the country.
You can view the celebration here and meet a family touched by the Lipper family’s generosity here. If you have questions or would like to learn more about how you, too, can support these programs, please click here.
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Team Jimmer
On October 21st, Jimmer Szatkowski completed "Loop the Lake," the Great New York State Marathon. The race was a success, Team Jimmer crossed the finish line 5 hours and 10 minutes after they started, with the help of friends, family, and six nurses on scooters along the way. The team surpassed their $25,000 fundraising goal four-times over, with all funds directly benefiting Tackle ALS.
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Joseph Kiley Foundation
On Sunday, October 6 the Joseph Kiley Foundation hosted their fourth annual Walk to End ALS at the Lincoln Woods State Park in Lincoln, Rhode Island. The event, which is named in memory of Joseph Kiley, raised $20,000 to support the Sean M. Healey & AMG Center for ALS at Mass General.
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Francis X. Carroll Memorial Tournament
The inaugural golf tournament in memory of Dr. Frank Carroll was hosted on September 16 in Mahopac, NY. With beautiful weather and a course filled with family, friends, and colleagues the tournament was a huge success raising over $100K for ALS research taking place at the Healey & AMG Center.
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Raising Funds for ALS through Musical Talent
David Hollister has raised more than $30,000 to support the Sean M. Healey & AMG Center for ALS at Mass General, through donations in return for his album “The Wolf is Always at the Door,” featuring cover songs that he has recorded since his ALS diagnosis. You can read more about his story here.
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As we approach 2025, we are filled with hope and anticipation for the groundbreaking research taking place at the Healey & AMG Center for ALS. We remain steadfast in our goal of discovering life-saving therapies for people with ALS. Initiatives like ALL ALS, Acceleration Centers of Enrollment, and the NIH-Sponsored ACT for ALS are pushing the boundaries of ALS research and have brought us to the brink of significant advancements that will transform the ALS space.
Our investigators continue working tirelessly on efforts targeting AI innovation, TDP43 biology, and understanding molecular mechanisms in neurodegenerative diseases. In the coming months, we will expand on several pivotal studies that promise to deepen our understanding of ALS and open new avenues for treatment.
Let’s make 2025 a year of remarkable breakthroughs. Your support is the heartbeat of our efforts—thank you for being part of this journey. Together, we are stronger, and together, we will forge a brighter future for everyone impacted by ALS.
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Our work at the Sean M. Healey & AMG Center for ALS combines outstanding, multidisciplinary care with clinical and basic research informed by the needs of our patients. Philanthropy allows us to accelerate the pace of discovery and make a meaningful difference to our patients and their families. Your support helps to fuel breakthroughs and discoveries in the field of ALS and ensure everyone with ALS can access effective treatments and therapies We are determined to find the cures and we are confident your partnership will get us there. Thank you for your consideration.
If you have questions or would like to learn more about how you can support the Sean M. Healey & AMG Center for ALS, please contact Emily Monteiro at emonteiro7@mgh.harvard.edu or visit https://www.massgeneral.org/neurology/als/support/.
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Massachusetts General Hospital
55 Fruit Street
Boston, MA 02114
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