October 2021 Foundation eNews

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FOUNDATION NEWS

AMX0035 May Slow ALS Progression and Extend Life

On September 15, Amylyx Pharmaceuticals announced its intention to submit a New Drug Application to the FDA for AMX0035 for the treatment of ALS.

If the New Drug Application is successful, AMX0035 would be only the third FDA-approved drug to treat ALS.

Les Turner ALS Foundation’s CEO Andrea Pauls -Backman is grateful to the clinical trial participants and stresses the importance of the New Drug Application: “The ALS community has waited a very long time to see a compound make a meaningful difference in slowing the progression of ALS and extending life. Thankfully, AMX0035 appears to do both. We are grateful to the 137 participants who were part of the Phase 2 trial and to Amylyx for its unwavering commitment to the ALS community.”

Andrea also announced that: “Our Les Turner ALS Center at Northwestern Medicine will start enrollment later this fall in the Phase 3 trial of AMX0035, as part of a 600-person international population enrollment.”

Senda Ajroud-Driss, MD, Associate Professor of Neurology and Director of the Lois Insolia ALS Clinic at the Les Turner Center at Northwestern Medicine, and site investigator for the clinical trial, is also hopeful: “The results of the AMX0035 Phase 2 trial and the open-label extension are very encouraging. For people living with ALS, extending life by 6 months is amazing.”

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Thank You for Making the 2021 ALS Walk for Life a Success!

Thank you to all who helped make our 20th Anniversary of the ALS Walk for Life a success!

We loved seeing you back in person at Soldier Field with your teams after two years, as well as seeing many new faces including nearly 50 new teams. We could feel the love and support all around. Those of you who were not able to walk with us in person, we thank you for walking with us virtually.

Despite the restrictions due to Covid, our teams raised over $500,000! We can’t thank you enough for your fundraising efforts. As you know, these funds go towards ALS research, support, and care. We couldn’t do it without you! Your ongoing contribution to the Walk for Life brings needed attention and awareness to ALS.

We were honored to recognize Chicago Bears’ Steve McMichael with the ALS Courage Award surrounded by his family, friends, and former Bears’ players. It was a very moving moment. We also recognized the Walk teams who received awards for their many years of dedication: 10-14 years; 15-19 years; and 20 years. You all are the heart and soul of the ALS Walk for Life!

In addition to our teams and participants, we are grateful for our industry partners, volunteers, and everyone involved in making our 20th Anniversary the success that it was. It takes a village, and we more than appreciate our village.

The 2021 ALS Walk for Life event has come to an end, but the ALS fundraising has not stopped. We are still accepting 20th Anniversary ALS Walk for Life funds until the end of the year. Please continue to encourage your friends, family, and co-workers to make a donation so that one day we realize our vision of a world free of ALS.

Also, please check to see if your company will match your gift.

 

 

Next in our ALS Learning Series: Navigating Important Conversations

Those living with ALS not only have to deal with the gradual loss of their motor skills and their ability to do everyday things that many of us take for granted, but they also face sensitive and difficult discussions pertaining to planning for a family, as well as discussions involving the progression of the disease and the plan for end of life. No matter how difficult, conversations between the ALS patient, family, and the support team are important. Our next two upcoming webinars in the ALS Learning Series, Family Planning and ALS and Hospice & Palliative Care for People with ALS, will help you with having these difficult discussions.

Family Planning and ALS

The decision to have genetic testing for a familial ALS gene is important and may have implications for those interested in starting a family. Our October 7 webinar, Family Planning and ALS, presented by Lisa M. Kinsley, MS, CGC, will look at family planning options available to individuals to reduce the risk of passing on a genetic disorder.

Lisa is the Senior Genetic Counselor and Assistant Professor of Neurology at Northwestern’s Feinberg School of Medicine. She provides genetic counseling services to patients with a variety of neurogenetic indications in the MDA, ALS, epilepsy, cognitive neurology, and movement disorders clinics. She also sees patients for a variety of genetic indications in Northwestern’s Neurogenetic Counseling Clinic.

The free, online webinar is part of the ALS Learning series and takes place this Thursday, October 7, from 12:00pm to 1:00pm CT.

Register

 

 

Hospice & Palliative Care for People with ALS

It is critical for individuals and families to engage in a series of conversations as to how best to align care with what is most important and meaningful to those receiving the care. These conversations are important because they help to empower the person living with ALS in making their own decisions, as well as ease the burden on family members left to figure out what their loved one would have wanted when communication becomes impaired.

Our November webinar, Hospice & Palliative Care for People with ALS, presented by Dr. Martha L. Twaddle, MD, FACP, FAAHPM, HMDC, will cover how to talk about end of life, what to say, and most importantly, when to say it. Dr. Twaddle will also discuss the differences between Palliative Care and Hospice Care, as well as their benefits, services offered, when to seek out this care, and what you need to know before signing up for hospice services. 

Dr. Twaddle is the Waud Family Medical Director for Palliative Medicine & Supportive Care at Northwestern Medicine. She has 30-plus years of clinical expertise and practice working with and supporting individuals and families with serious illness at the end of life.

The free, online webinar is part of the ALS Learning Series and takes place on Thursday, November 11, from 12:00pm to 1:15pm CT.

Register

 

Join our 11th Annual Les Turner Symposium on ALS

The 11th Annual Les Turner Symposium on ALS on Monday, November 1 will be hosted by the Les Turner ALS Center at Northwestern Medicine.

The day-long symposium will be held virtually and will feature presentations from leading ALS researchers and clinicians, as well as a clinical conversations panel.

Robert H. Brown, Jr., D.Phil, MDOur keynote speaker this year will be Robert H. Brown, Jr., D.Phil, MD, who will discuss ‘New Directions in ALS Therapies.’

Dr. Brown has a longstanding research interest in identifying gene defects that underlie ALS. He and his team have used insights from their investigations in genetics to generate cell and animal models of each of these defects. Most recently, he has initiated trials of gene suppression therapy (SOD1, C9orf72).

Other Symposium presentations will include discussions on the NU-9 compound found to reverse ALS damage in mice, along with recent advances related to frontal temporal lobe dementia and the implications in developing therapeutic approaches for ALS.

Register