End the Legacy Newsletters
2025-2026 Winter Newsletter
As I reviewed the last weeks of 2025 and the start of 2026, I am so impressed with the ability of those in our community to get things done. The amazing Dr. Yentli Soto Albrecht’s educational series, Search for a Self Cure, and her ambitious research fundraiser, Pushups for ALS, are transforming our community.
The hard work of many End the Legacy volunteers—including Jary, Daniel, Mindy, Wanda, Kerri, Cassandra, Kelsey, and others—has resulted in our At-Risk Care Survey, which is now open. If you are at risk for inherited ALS or FTD, we hope you will take it here.
With our friends at ALS Network, and their representative Dr. Sarah Dougherty, along with a team of volunteer planning committee members, much work is being done to plan for our September Genetic ALS & FTD Community Summit. Registration will open later this month.
In Europe, we have been thrilled to welcome Emma Bouche as our new European Officer, where she is leading European community-building efforts in both French and English.
All of this has been made possible by the successful raising of needed funds, which our community knocked out of the park during our end-of-year appeal, meeting its goal late last year. Together, we can do much.
Mindy interviewed C9 ALS patient Tina Johnson, and her story is powerful. We are glad she found us. Also included are links to other groups, events, and articles we think you may appreciate.
In solidarity,
Jean Swidler
Genetic ALS & FTD End the Legacy
Research
Our inaugural Community Science Liaison, Dr. Soto Albrecht, has attended a number of prestigious academic meetings on the diseases that impact our families with support from End the Legacy. At the Gordon Meeting on FTD Research, she shared a poster on the work of End the Legacy.
At the 2025 ALS/MND Symposium in San Diego, the genetic community had a strong showing, including our own Cassandra Haddad presenting a poster on End the Legacy summits.
On April 8, the Lancaster, Pennsylvania community will be celebrating the life of long-time teacher Brother Frank Albrecht, father of Dr. Soto Albrecht, who died of C9orf72 ALS in 2024. A “Pushups for ALS” challenge will be conducted, raising money for familial ALS and FTD research. You can participate on-site or virtually. Join in and help make this vital fundraiser a success! Learn more and donate here.
We also celebrated the participation of gene-negative siblings in genetic ALS and FTD families as controls in natural history research. We celebrate all who participate, but especially recognize the amazing Maureen!
Advocacy
Ensuring our community’s views are heard on important issues is vital to our mission, and we were proud to represent those views in discussions at the biannual Compassionate Use and Preapproval Access Conference.
End the Legacy, with support from our Policy Advisor Tim Bergreen, was proud to push the importance of the ALL ALS / Prevent ALS natural history study in negotiations regarding the reintroduction of the Act for ALS. ALS research needs a well-funded push from the federal budget, and 2027 requests are being finalized now. Join the joint letter from the ALS community, including End the Legacy, in requesting robust ALS research funding from your federal representatives.
Genetic nondiscrimination continues to be a priority for our movement. Bill continues to push the issue in South Carolina, and recently the Insurance Commissioner for California, Ricardo Lara, in partnership with Assemblymember Wilson, has introduced model anti-genetic discrimination legislation. Stay tuned for ways you can help these efforts.
Education
While attending scientific meetings, Dr. Soto Albrecht conducted interviews with many top ALS researchers to help bring their work back to our community, along with other updates, in a new Search for a Self Cure series of videos and blog posts. See the latest and past episodes here. We extend sincere thanks to all working on the series, including ETL member Brooke.
We are excited to have introduced a new way to provide genetic counseling education. Our Genetic Counselor, Shannon Therese Terek, has already conducted two small-group education sessions for a genetic ALS and FTD audience, with a third scheduled for April. Secure one of the few remaining spots here.
In December, Professor Jenna Gregory of the UK presented her lab’s work on biomarkers for ALS, and a recording of the webinar with translated subtitles was released last month. See it here.
Care
What we feel passionately about is that those at risk for genetic ALS and FTD should be able to receive care for their own medical benefit related to this risk, if they choose, in line with expert guidance. However, many details are still being worked out. And do you know whose opinion on this matters? Yours.
To ensure the community perspective on this issue is understood, a survey was developed by committed volunteers, with feedback from over 40 key opinion leaders in ALS and FTD to make it as responsive as possible. That survey is available at this link, and we hope you will take it and share it with others. It is anonymous, so please only take it once.
The results of the survey will be presented at an upcoming meeting hosted by Drs. Heiman-Patterson and Benatar to further refine the Guidance for Carriers that emerged from the first meeting on this topic in 2023. End the Legacy is proud to sponsor and participate in these deliberations.
Support
Our 3rd Annual North American Genetic ALS and FTD Community Summit will be held in Sacramento, California, on September 24–26. Our volunteer planning committee has been working hard to finalize the agenda, iron out details, and invite speakers. Registration and initial agenda highlights are coming later this month. Registration is capped at 100, so be sure to register early.
Our monthly Peer Support Hour and our biweekly Community Team Meetings have continued and welcomed many new participants.
In Europe, Emma has led the formation of a French Community Team, which has conducted three successful experience-sharing sessions in 2026, as well as a first community team meeting last week. A first English Community Team Meeting was held in January, with a second scheduled for April 2 at 7 PM UK time. If you would like to join the French or European English community team lists, please email us at info@endthelegacy.org.
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Member Spotlight Tina Johnson, interviewed by Mindy Uhrlaub
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What is your connection to ALS/FTD?
My uncle, Ronnie Winters, was like a second father to me and he worked for many years at 3M. One day, he noticed he could not sign a paper. He was diagnosed with ALS. I saw him periodically as he declined, walking with a cane, then in a wheelchair, and having difficulty eating. Six months later, I was there in the hospice room when he took his last breath. Never did I think I would get diagnosed with the same terminal disease. The shock of the diagnosis had my mind going everywhere.
When I first Googled “slower and slurred speech,” which was my first symptom, I read that dysarthria stemmed from various neurological diseases, like stroke, brain injury, MS, Lyme disease, Parkinson's, or ALS. I was calling doctors and going to the urgent care and the emergency room because I knew something wasn't right. My family doctor saw me, and he noticed my speech and ordered an MRI of my brain and spine. The results were inconclusive. He told me to make an appointment with a neurologist, but the earliest appointment was approximately ten months out. By that time, my left hand was weak, and swallowing food became more difficult.
The words, "There is no way to say this, but I think this is ALS. There is a test to confirm, called an EMG…” will forever be engraved in my mind. The end result was that I had both upper and lower motor neuron ALS. By this time, I was searching for documentaries on ALS. I found Steve Gleason and Brian Wallach. Deep down, I did not want to believe it, but I knew. Then, after genetic counseling, the test came back positive for the C9 gene.
If you could change anything about the way genetic carriers (patients) of FTD/ALS were treated, what would it be?
My change would be a swifter diagnosis. This could be attained by having more access to practicing neurologists, so patients don’t have to wait so long to see them. Also, knowing my uncle passed away from ALS, I wish someone would have told me to get genetic counseling when I was in my college years. I have an aunt on my paternal side who is living with MS, so that always concerned me. But I always thought I would get breast cancer instead, since both my maternal and paternal grandmothers had that. I started getting mammograms when I turned 30. I have always been focused on my health and wellness. Working out was another passion of mine throughout my life, especially after I had a miscarriage. Speaking and writing were also strengths for me, but my C9 ALS diagnosis has terrified me in every way.
What gives you a sense of purpose, even with C9 disease?
All my adult life, I have loved helping others, especially when I’m mentoring paralegals or doing health and wellness coaching. I know that being "present" in life is key; finding joy when all hope is gone. I know I can find joy in each day, but it is very hard. I have my one and only son, Eli, who is my world. I am so sad that I won’t get to see him get married, and I’ll never hold a grandbaby. My emotions and fear take turns bursting out every day. I am six months into my diagnosis, so I'm thinking of my Uncle Ronnie each day. I just want to smile and share my compassionate self with the world. Another thing that gives me a sense of purpose is bringing ALS awareness to the world, by passionately educating people and doing everything I can to help find a cure.
Please tell us some fun facts about you that we don't already know.
A fun fact is that my paralegal career is the essence of my being. I was so honored when my law firm and the MN Paralegal Association created an award in my name, the "Tina M. Johnson Legal Service Impact Award." I am also a passionate gal who collects frogs and wears patchouli. My favorite artist is singer/songwriter Bobby Long, whose song, “Dead and Done," is my funeral song. The first line goes, "Heaven is a place where people die pretty."
Links
An op-ed from team member and author Mindy Uhrlaub in Stat News.
The UK Oxford MND Research Team is hosting an education day for the Familial ALS community in late April. Learn more here.
End the Legacy Board Member Nadia Sethi and others have debuted a new organization for ALS patients and Families to better understand research: NorthstarALS.