End the Legacy Newsletters

2026 Summer - Fall Newsletter

We are all still buzzing from our biggest event of the year where we coalesce the largest group of individuals at genetic risk of ALS and FTD anywhere in the world. This is our last newsletter of the year and please see how you can be a part of this movement!

1) Keep our movement going into 2027 - your donations up to $30,000 will be matched dollar for dollar raising up to $60,000 powering initiatives like the ones you see below.

2) If you are at risk for genetic FTD (which includes most ALS risk genes like C9orf72) consider filling out this survey detailed in our research section below.

3) Review our newly refreshed website with a new design and many new features including an updated genetic testing information page.

Read to the bottom of this newsletter, we have a wonderful member spotlight interview and links to a great event featuring the amazing Mindy Uhrlaub and some other resources and studies.

It is the greatest privilege to be able to communicate to you the news that so many had hands in making real. I am so proud to call many of them friends and all of them compatriots in the movement for our families.

In Solidarity

Jean Swidler

EndtheLegacy.org

Support

Sacramento Summit

We came together in 2026! With the support of dedicated committee members, dedicated speakers, an engaged community, and generous sponsors we had our largest summit yet! We were so proud to do it in partnership with our friends at ALS Network. See photos, the agenda and more at our summit website endthelegacy.org/communitysummit2026 . To ensure we have a 2027 summit join our matching campaign!

Potential European Summit

A group of European genetic advocates have decided to form a committee to plan a European summit for 2027. Cheers to them and our European Board Officer Emma who is leading the initiative up. The possibility of this is predicated on resourcing organizing efforts for this great continent.

Peer Support

As always time for informal peer connection at the summit was a clear highlight in our post event surveys. Throughout the year this is possible to participate in virtually with our monthly peer social hour. Many cheers for our regular volunteer facilitators Mindy and Carolyn!

Care

Genesis Network Meeting

At our 2026 summit many of the dedicated clinicians who lead End the Legacy recognized centers of at risk care gathered to discuss the program. An agreed upon important point was the specific needs for genetic patients even after diagnosis especially for those with treatments. Cheers to Drs Rosow, Lomen Hoerth, Arjoud-Driss, Heiman-Patterson, and Morganroth for attending and to our own Vice Chair Cassandra Haddad, CRNP for leading this work.

As a Sod1 carrier, It has been a privilege to be a part of mainstreaming at risk care, from our first tentative discussions in 2023 to the reality of multiple clinics around the country. I'm eager to add to our recognized centers in 2027 and looking forward to meeting with clinics around the country at NEALS 2026.

Cassandra Haddad, CRNP

At NEALS 2026 Cassandra will debut our next round of clinic qualifications. Can we make this map more populated with new at risk care centers recognized?

Education

Webinars

We hosted three informative webinars over the last few months including Dr. Lee from Columbia university on metabolic alterations possibly linked to ALS development, Drs. Amador and Tzeplaeff speaking about at risk studies in Europe in French, and Dr. Benatar speaking on his biomarker panel to predict ALS onset. The first two are now available on EndtheLegacy.org/webinars with Dr. Benatar’s to be added soon.

Upcoming Webinars

On October 30th we are hosting Amanda Nottke, PhD an experienced disease research advocate for an interactive learning session on tips for evaluating claims about things that may delay or prevent ALS or FTD. Register for that here https://www.endthelegacy.org/event-details/assessing-claims-about-als-ftd-treatment-and-prevention

New Announcement - On November 17th we are hosting two leaders from Arbor Biotechnologies a gene editing pharmaceutical company. See their press release highlighting their new candidates for gene editing relevant to ALS / FTD including C9orf72 here https://arbor.bio/arbor-biotechnologies-nominates-three-gene-editing-development-candidates-for-als-with-potential-to-address-up-to-97-of-people-living-with-the-disease/, and sign up for the event here. https://www.endthelegacy.org/event-details/updates-on-crispr-for-treatment-of-genetic-als-ftd-from-arbor-biotechnologies

Genetic Counselling Education

We continue to offer supportive interactive sessions to learn about genetic testing and the importance of genetic counselling from a licensed genetic counselor and we are having two new small group sessions: November 2nd 2026 at 7pm Eastern - Register Here - January 4th 2027 at 7pm Eastern - Register Here

Website Refresh!

Cheers to Patrick Young a volunteer for working hard refreshing our website. It has a great new look and particularly revised genetic testing and research study sections.

Research

First Scientific Advisor Appointed

Daniel Brickman, PhD was appointed End the Legacy’s first Scientific Advisor, a volunteer position. He comes to the movement via a family background of C9orf72 disease and academic and industry explorations of clinical trial design and biostatistics. Learn more about his story in the member spotlight below!

Daniel has been engaged in a robust initiative to ensure the literature discussing C9orf72 community members and others impacted by inherited ALS and FTD reflects what the actual evidence is. Cheers Daniel and welcome. We cannot wait to debut the product of these investigations.

End the Legacy Research Initiative

At our Community Summit Daniel led a series of focus groups on the topic of behavioral informants in research, a survey related to that is available to complete and if you are at risk of genetic FTD see details:

Dear End the Legacy Community,

If you already completed this survey through an earlier invitation or during the Summit, thank you. Please do not complete it again.

Genetic ALS & FTD: End the Legacy is sponsoring a research study led by Daniel Brickman, PhD, about how people at increased genetic risk for frontotemporal dementia (FTD) view the use of study partners in long-term research.

A study partner, sometimes called an informant, is someone close to a research participant who answers questions about the participant’s functioning and possible symptoms.

You may be eligible to participate if you:

● Are 18 years of age or older and currently live in the United States or Canada;

● Consider yourself to be at increased genetic risk for FTD because of your family history, a genetic test result, or both; This includes, but is not limited to, risk associated with C9orf72 (sometimes called C9), TARDBP, or any other gene associated with increased risk of both ALS and FTD.

● Do not currently consider yourself to have FTD, ALS, or another related neurodegenerative disease; and

● Can identify one adult whom you might consider choosing as a study partner.

Eligibility is based on your own understanding; genetic results and medical records will not be requested or verified.

The anonymous online survey takes approximately 15–20 minutes. It asks you to consider a hypothetical long-term research study, review examples of questions that study partners might be asked, and share your views about the possible benefits, harms, and consent information associated with using study partners.

Participation is voluntary and uncompensated. Some questions concern genetic risk, research participation, and close relationships and may feel personal. You may stop at any time.

TAKE THE SURVEY

End the Legacy is distributing this invitation but will not know who completes the survey. Additional information about the study, privacy protections, and your rights as a research participant appears on the consent page at the beginning of the survey.

Questions about the study may be directed to:

Daniel Brickman, PhD
brickmand@gmail.com

Questions about your rights as a research participant may be directed to:

North Star Review Board
info@northstarreviewboard.org

Advocacy

Bringing our Community's Concerns to the NAPA Council

The law that funds most dementia research in the United States also empowers a panel of appointed representatives to oversee this spending. This NAPA Advisory Council has periodic public meetings, most recently October 19th. End the Legacy was able to query the council on how they intend to protect the interests of genetic groups when NAPA funded researchers use their largesse to denigrate people with those genes, as recently occurred in the June 2026 New Yorker Article. The council committed to following up via email.

ISFTD

End the Legacy was proud to be present at the largest FTD research meeting of the year held in Philadelphia earlier this month. Cassandra Haddad ensured the assemblage had the chance to learn about at risk genetic care.

Progress on Genetic Insurance Protections

This fall the state of California joined Florida in approving a law that dis-allows using genetic information to limit or deny most amounts of insurance, the California law goes into effect in 2027. Now that ⅕ of the US population is covered we need this to exist at the Federal level. End the Legacy is in touch with other organizations interested in this issue and our policy advisor Tim Bergreen is helping us chart these waters. Stay tuned for progress in 2027 and be prepared to make your voice heard!

International Alliance of ALS / MND Organizations

Emma will be sharing about the movement for genetic families in Europe with End the Legacy on a panel in front of the assembled representatives from the global ALS / MND charitable network. It is an amazing opportunity to learn and share with others deeply connected to all ALS / MND families in the world and we thank the Alliance for putting it on and having us attend.

Member Spotlight - Daniel Brickman, Interviewed via E-mail by Mindy Uhrlaub

1. What is your connection to genetic ALS/FTD?

I didn’t grow up knowing my biological father or half-siblings. As an adult, about 15 years ago, I was sitting on my couch and received a phone call from my half-sister telling me that our father had a genetic disease. My heart dropped. Which one? I still remember her struggling to pronounce the name of the disease. ALS, I suggested? Yeah. Oof. And that is how I learned that genetic (C9orf72) ALS was part of my family’s story. I’ve chosen to keep my own genetic testing decisions and status private. I believe everyone should be able to decide whether, when, and how to share that information, and think there’s room in this community for different choices. My family connection, along with my background in statistics and drug development, motivates me to help advance research toward a future in which families can live free from ALS and FTD, and feel informed and supported along the way.

2. What are the most promising things you see on the horizon for us as a community?

Since becoming ETL’s Scientific Advisor, I’ve been helping connect community priorities with careful interpretation of research and thoughtful study design. I’m encouraged by the opportunities for people personally affected by genetic FTD and ALS to partner with researchers to advance prevention and cure. We bring different kinds of expertise, and our work can be stronger when we learn from one another. I’m excited to be working with a small team to help translate existing research and guidance into accessible lifestyle information for people at genetic risk. We want to explain what the evidence supports, what remains uncertain, and how to think about everyday choices without adding unnecessary fear or blame. I’m also contributing to trial-design discussions focused on questions our community cares deeply about, especially whether an intervention can prevent or delay clinically manifest FTD or ALS. I don’t know when a cure will come, but I do know we each have something to contribute. By working together and building bridges, we can help move toward a future free of FTD and ALS.

3. What did you think of the Summit this year?

I'm so thankful to ETL for creating an in-person forum to meet, learn, and grow. I really loved meeting people, hearing stories, and getting a deeper appreciation for what matters to other people in the community. I also appreciated hearing about the research underway and having opportunities for community members and researchers to ask questions and learn from one another. I left feeling more connected to the community and inspired to contribute!

4. Please share something about yourself that we don't already know.

When I was a high school sophomore, I took probability and statistics at Skyline College and loved it. For the final exam, I thought one question might have a mistake and went to the tutoring center to ask the person in charge for clarification (which was allowed). Turns out the question did indeed have an error. The boss then proceeded to offer me a job tutoring statistics at the learning center, which was then my part-time gig for the rest of high school. It was such a blast! Over time, it morphed into tutoring all sorts of topics and I learned how to flex based on the specific interaction to be as helpful as possible. Eventually I was even able to drive myself to work. : )