ALSP Awareness Month 2022 is officially underway, and Sisters’ Hope Foundation wants you to help us raise awareness and celebrate this exciting time for ALSP patients and families. This year’s theme is “Bridging the Gap” in Awareness.
Here are a few ways you can help with #BridgingTheGap and raise Awareness for ALSP.
- Follow us on social media, post and share
- Share your story, a caregiver story or a family members story and be featured on our website
- Talk to 1 person about ALSP each day during the month of March
- Illuminate a bridge in pink and purple for #BridgingTheGap
- Make a donation of $1 per day each day in March = $31
- If you are an ALSP family affected by the CSF1R mutation; consider genetic testing https://www.invitae.com/en/leukodystrophies
- Already diagnosed with the CSF1R mutation, consider participating in the Natural History Study at https://clinicaltrials.gov/ct2/show/NCT05020743?term=NCT05020743&draw=2&rank=1 and the Patient Registry at www.alspregistry.com.
- Take a video of you and your friends saying “Adult-onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia”
- Most importantly, HAVE FUN!!!