First I want to invite you to join me on Tuesday, February 8th from 10-1 CST for a truly inspiring conversation. Register HERE for free and you’ll definitely see a familiar face. Her ALS Story is receiving The Jaci and Alex Hermstad Trailblazer Award during this event.

“Amyotrophic lateral sclerosis (ALS) afflicts both genders, yet older men are the public face of this crippling neurodegenerative disorder. The reality is 45% of newly diagnosed patients are women, and while it is frequently diagnosed between 40 and 60 years old, it can strike at a very young age. Attendees of the virtual event will listen in on three intimate journeys from Her ALS Story members and women speaking for the advocacy, clinical, and research community who are driving change from diagnosis, to drug development to clinical trials.”

criver.com

Next I want to introduce you to the women of Her ALS Story. Finding this group saved my life and my sanity. Having conversations and contact with new friends living ALS every day keeps me motivated to do more, to be more, and gives me hope for the future.

“We are a group of women diagnosed with ALS before our 35th birthdays. To challenge the stereotype that ALS is an older white man’s disease, we foster an open dialogue about our declining health in female-centric media outlets. We cultivate relationships with female lawmakers to improve current insurance and Medicare standards, and introduce legislation to speed up the drug pipeline. We raise money for the pursuit of unbiased, supercharged ALS research to ultimately end this devastating disease.”

heralsstory.org

Sadly, some ALS diagnosis stories include a familial genetic mutation. The Hermstad twins had the FUS-ALS mutation which took Alex at 17 and Jaci at 25. Their legacy is a collaboration that led to the development of the novel antisense therapy Jacifusin. Their family has fought tirelessly and with great losses to improve the life of others living with ALS.

“The heartache of losing both Jaci and Alex will never go away and we wished more than anything Jaci was still here with us sharing in all the amazing medical advancements with jacifusen and FUS-ALS she was so much a part of. We find comfort in knowing the impact of what it is doing and that others can benefit and even save because the help of Jaci’s heroic efforts. Our girls are trailblazers and champions with all they did for ALS.”

Hermstad Family

See you Tuesday!