December 10, 2024

Sisters’ Hope Foundation’s word for 2024 is EDUCATION.  Nearly every priority and project we participated in had education as the foundation.  While there is still education work to be done, we have made big strides this year!

The year started off strongly as Sisters’ Hope Foundation led an FDA Patient Listening Session.  We used the opportunity to educate the FDA on specific aspects of the patient journey by sharing personal stories highlighting ALSP most bothersome symptoms.  We talked about the symptom burden on both patient and caregiver.  We painted a picture about the long-term impact of the ALSP on the family.  Finally, we spoke of our communities expectations and hope for treatment options.

We created a Doctor Mailer which was released in May during ALSP Awareness Month.  This mailer, comprising 7 letters and accompanying inserts, has been mailed and emailed to 1,000 neurologists, genetic counselors, and neuropsychiatrists.  These mailers educate them on important aspects of ALSP – what is it, common misdiagnoses, how ALSP can be diagnosed, resources for genetic testing, current clinical trial options, a layout of common symptoms and necessary care team members, and a handout for newly diagnosed patients to help them cope with a life changing diagnosis.  You can find the complete mailer ALSP Doctor Mailer

Sisters’ Hope hosted the second annual ALSP Community Conference in March 2024.  We spent the majority of the conference focused on patients, caregivers, and families – their journey and what it is like to be living with ALSP.  The conference gave our community of doctors, researchers, patients, caregivers, and families something truly special – unity.  We weaved together the science and the humanity of ALSP.

Vigil Neuroscience sponsored and co-hosted two webinars with Sisters’ Hope.  The first webinar, “Biomarkers 101,” was deeply informative about the importance of biomarkers in disease understanding and drug development.  To watch that webinar, click here: Biomarkers 101

The second webinar, “Know Your Genes, Understanding Genetic Testing,” delved into the key aspects of ALSP genetics and the genetic testing process.  To watch that webinar, click here: Know Your Genes Webinar

Speaking engagements were plentiful in 2024!  Heidi Edwards, Erin Sullivan, and Kim Cade, presented in multiple forums about life with ALSP.  Highlights included Kim’s opening at the American Brain Foundation Gala, Heidi’s participation in an FDA Webinar about the importance of a support team during clinical trials (click here to watch: FDA CBER RegenMedEd Webinar: Finding Your Support Team While Participating in a Clinical Trial – Zoom), and Erin’s presentation at United Leukodystrophy Foundation Conference (click here to watch: 2024 ULF Family Conference: ALSP).

These are just a few highlights of our 2024 Education push.  We know that each of you in our community have also played a significant role in ALSP education.  You share your lived experience with ALSP in your families and local communities, raising awareness and spreading knowledge.

As a community, we will continue to educate about ALSP in hopes of raising more awareness about this rare disease, increasing the rate of correctly diagnosing ALSP, and pushing research forward, leading to a cure!