@end-the-legacy.bsky.social
The fear of genetic discrimination impacts anyone faced with the choice of pursuing genetic treatments, and the impact of this fear is not the provision or denial of niche insurance products, but the pursuit or denial of genetic medicine approaches to terrible and sometimes terminal diseases.
December 11, 2025 at 12:05 PM
The fear of genetic discrimination impacts anyone faced with the choice of pursuing genetic treatments, and the impact of this fear is not the provision or denial of niche insurance products, but the pursuit or denial of genetic medicine approaches to terrible and sometimes terminal diseases.
If you are at risk for genetic ALS or FTD - researchers would love for you to sign up for studies that seek to understand what is happening in your body, and how it may relate to the development (or not) of ALS or FTD in the future.See studies here:https://www.endthelegacy.org/recruiting-studies
December 10, 2025 at 12:27 PM
If you are at risk for genetic ALS or FTD - researchers would love for you to sign up for studies that seek to understand what is happening in your body, and how it may relate to the development (or not) of ALS or FTD in the future.See studies here:https://www.endthelegacy.org/recruiting-studies
Just checking in with those at great risk of developing ALS on a regular basis would result in an earlier diagnosis of ALS for the 10-15% of cases in those families. Learn what you can do about your risk today at endthelegacy.org/care .
December 8, 2025 at 12:17 PM
Just checking in with those at great risk of developing ALS on a regular basis would result in an earlier diagnosis of ALS for the 10-15% of cases in those families. Learn what you can do about your risk today at endthelegacy.org/care .
End the Legacy Board Member Nadia Sethi has taken her long stewardship of patient communications with the ALS community to a new organization North Star ALS. Check them out at tonight’s poster session if you are in San Diego!
December 7, 2025 at 1:36 AM
End the Legacy Board Member Nadia Sethi has taken her long stewardship of patient communications with the ALS community to a new organization North Star ALS. Check them out at tonight’s poster session if you are in San Diego!
Attending the premier scientific ALS meeting of the year? Consider chatting with any of those in this photo who have had their life touched by genetic or inherited ALS and FTD. Here is to a great conference and much progress towards a cure!
December 5, 2025 at 11:41 PM
Attending the premier scientific ALS meeting of the year? Consider chatting with any of those in this photo who have had their life touched by genetic or inherited ALS and FTD. Here is to a great conference and much progress towards a cure!
Save the date! In the new year we are gathering anyone impacted by inherited or genetic ALS / MND and FTD from the United Kingdom, Ireland or other English Speakers in Europe. Join us for a community forum facilitated by UK ETL volunteers.
December 5, 2025 at 10:08 AM
Save the date! In the new year we are gathering anyone impacted by inherited or genetic ALS / MND and FTD from the United Kingdom, Ireland or other English Speakers in Europe. Join us for a community forum facilitated by UK ETL volunteers.
Help bring attention to this injustice for her and the other Sod1 patients in Norway by sharing her story and emailing their minister for health Jan Christian Vestre at [email protected] asking for their help in ensuring her neurons can be saved before it is too late.
December 4, 2025 at 12:01 PM
Help bring attention to this injustice for her and the other Sod1 patients in Norway by sharing her story and emailing their minister for health Jan Christian Vestre at [email protected] asking for their help in ensuring her neurons can be saved before it is too late.
Today is Giving Tuesday. Think about what it would be like to have nowhere to turn for information, support and recognition in a Genetic ALS family. That was what each of ours had to endure before End the Legacy. Join our generous match to keep our movement going! https://givebutter.com/GcP5ep
December 2, 2025 at 9:38 AM
Today is Giving Tuesday. Think about what it would be like to have nowhere to turn for information, support and recognition in a Genetic ALS family. That was what each of ours had to endure before End the Legacy. Join our generous match to keep our movement going! https://givebutter.com/GcP5ep
The End the Legacy team has delivered again and again for the genetic community and we need your support to keep this movement going. With a generous match your donation is stretched to make a 3x impact!
https://loom.ly/NnM5-g8
https://loom.ly/NnM5-g8
December 1, 2025 at 4:43 PM
The End the Legacy team has delivered again and again for the genetic community and we need your support to keep this movement going. With a generous match your donation is stretched to make a 3x impact!
https://loom.ly/NnM5-g8
https://loom.ly/NnM5-g8
We cheer the organizers of the just completed 2025 ALS/MND Alliance meeting where patient groups from around the globe gather for two days of learning and connecting. The genetic community was vibrantly involved throughout the two days.
December 1, 2025 at 2:44 AM
We cheer the organizers of the just completed 2025 ALS/MND Alliance meeting where patient groups from around the globe gather for two days of learning and connecting. The genetic community was vibrantly involved throughout the two days.
Through our community of dedicated volunteers, End the Legacy has firmly staked the claim that those impacted by inherited ALS and FTD are a unique disease community with unique interests. Since organizing we have won acknowledgement for our community that is broadly recognized. But more is needed.
November 28, 2025 at 2:49 PM
Through our community of dedicated volunteers, End the Legacy has firmly staked the claim that those impacted by inherited ALS and FTD are a unique disease community with unique interests. Since organizing we have won acknowledgement for our community that is broadly recognized. But more is needed.
Happy Thanksgiving to all who celebrate! We are thankful for all our volunteers but today especially the leaders who gathered virtually in France this evening to continue planning how to organize the at risk community there!
November 27, 2025 at 8:14 PM
Happy Thanksgiving to all who celebrate! We are thankful for all our volunteers but today especially the leaders who gathered virtually in France this evening to continue planning how to organize the at risk community there!
Attending the largest scientific meeting for ALS in the world in San Diego next week and impacted by genetic or inherited ALS? Come together with others impacted for a group photo Friday December 5th at lunch! Questions? - email [email protected]
November 25, 2025 at 12:30 PM
Attending the largest scientific meeting for ALS in the world in San Diego next week and impacted by genetic or inherited ALS? Come together with others impacted for a group photo Friday December 5th at lunch! Questions? - email [email protected]
We appreciate this note of common, intuitive, and proven sense shared by Dr Miller that debuted in the review article titled "Clinical trials of riluzole in patients with ALS" published in the Journal Neurology in 1995. See our movement continue at https://www.endthelegacy.org/2025appeal
November 24, 2025 at 12:14 PM
We appreciate this note of common, intuitive, and proven sense shared by Dr Miller that debuted in the review article titled "Clinical trials of riluzole in patients with ALS" published in the Journal Neurology in 1995. See our movement continue at https://www.endthelegacy.org/2025appeal
This holiday season we are sharing our wish list for ALS leaders! Earlier this month advisors to a major ALS research and care group asked us to prepare what we would like to see from ALS leaders. We are sharing those main points here. Read them in detail at https://www.endthelegacy.org/latestnews !
November 21, 2025 at 12:16 PM
This holiday season we are sharing our wish list for ALS leaders! Earlier this month advisors to a major ALS research and care group asked us to prepare what we would like to see from ALS leaders. We are sharing those main points here. Read them in detail at https://www.endthelegacy.org/latestnews !
The Neurology Live podcast interviewed NEALS co-chairs Drs Jinsy Andrews and James Berry the full episode can be heard here neurologylive.com/view/episode-154-neals-2025-takeaways-that-matter-for-als-care , Dr Andrews championed prevention and Dr Berry shared kind words about End the Legacy.
November 19, 2025 at 7:03 PM
The Neurology Live podcast interviewed NEALS co-chairs Drs Jinsy Andrews and James Berry the full episode can be heard here neurologylive.com/view/episode-154-neals-2025-takeaways-that-matter-for-als-care , Dr Andrews championed prevention and Dr Berry shared kind words about End the Legacy.
End the Legacy has continued to deliver and innovate for all those impacted by Genetic ALS & FTD in 2025, and we need your support to keep that work going in 2026. Support the work by visiting https://loom.ly/FSnkI5k and make use of our amazingly generous 2 for 1 matching program today!
November 19, 2025 at 11:24 AM
End the Legacy has continued to deliver and innovate for all those impacted by Genetic ALS & FTD in 2025, and we need your support to keep that work going in 2026. Support the work by visiting https://loom.ly/FSnkI5k and make use of our amazingly generous 2 for 1 matching program today!
End the Legacy will be sharing important information about the Genetic ALS & FTD community in upcoming winter ALS meetings. Come say hi if you are attending! #EndTheLegacy #NothingAboutUsWithoutUS
November 18, 2025 at 12:56 PM
End the Legacy will be sharing important information about the Genetic ALS & FTD community in upcoming winter ALS meetings. Come say hi if you are attending! #EndTheLegacy #NothingAboutUsWithoutUS
The holiday season can remind us all of those we have lost, and when the same terrible disease has taken many it's presence in their absence is palpable. Our monthly peer support hour is this Wednesday and our community team meets twice a month. #endthelegacy #atrisk #als #ftd
November 17, 2025 at 12:18 PM
The holiday season can remind us all of those we have lost, and when the same terrible disease has taken many it's presence in their absence is palpable. Our monthly peer support hour is this Wednesday and our community team meets twice a month. #endthelegacy #atrisk #als #ftd
No matter your risk of a disease every person deserves to be allowed to express themselves as they wish. No one has a script they must follow, and no one should be judging a loved one's thoughts and feelings as if they are the arbiters of what that person may express.
November 13, 2025 at 12:57 PM
No matter your risk of a disease every person deserves to be allowed to express themselves as they wish. No one has a script they must follow, and no one should be judging a loved one's thoughts and feelings as if they are the arbiters of what that person may express.
Join us on November 18th for a talk on the cutting edge of biological marker development in ALS and related neurodegenerative diseases by Professor Jenna Gregory. https://www.endthelegacy.org/event-details/human-tissue-analysis-powering-biomarker-progress-in-als-an-update-from-prof-gregory
November 10, 2025 at 12:17 PM
Join us on November 18th for a talk on the cutting edge of biological marker development in ALS and related neurodegenerative diseases by Professor Jenna Gregory. https://www.endthelegacy.org/event-details/human-tissue-analysis-powering-biomarker-progress-in-als-an-update-from-prof-gregory
As announced our next North American Genetic ALS & FTD Community Summit will be held in Sacramento California September 24th-26th, 2026. We are so proud to be working with West Coast based ALS Network on this event. To be notified when registration for 2026 opens email [email protected]
November 7, 2025 at 12:23 PM
As announced our next North American Genetic ALS & FTD Community Summit will be held in Sacramento California September 24th-26th, 2026. We are so proud to be working with West Coast based ALS Network on this event. To be notified when registration for 2026 opens email [email protected]
We are excited to announce the University of Minnesota has fulfilled all requests to be recognized as another center for At Risk Care! They also have the Prevent ALS study and if you either want to be seen for your risk as a research subject or a patient reach out! Visit endthelegacy.org/care
November 6, 2025 at 1:03 PM
We are excited to announce the University of Minnesota has fulfilled all requests to be recognized as another center for At Risk Care! They also have the Prevent ALS study and if you either want to be seen for your risk as a research subject or a patient reach out! Visit endthelegacy.org/care
In inherited ALS and FTD one haunting spectre of the disease is anosognosia or the condition of symptoms being invisible to the patient. This complication can lead to the othering , so we have this gentle reminder patients must always be at the center of any disease that is impacting them.
November 5, 2025 at 12:53 PM
In inherited ALS and FTD one haunting spectre of the disease is anosognosia or the condition of symptoms being invisible to the patient. This complication can lead to the othering , so we have this gentle reminder patients must always be at the center of any disease that is impacting them.
We look forward to seeing continuing investigations as to what causes this difference in impact. See more at endthelegacy.org/c9orf72info
#endthelegacy #c9orf72
October 30, 2025 at 12:21 PM
We look forward to seeing continuing investigations as to what causes this difference in impact. See more at endthelegacy.org/c9orf72info
#endthelegacy #c9orf72