ALSP Awareness

March is ALSP Awareness Month

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.

  1. Follow us on social media, post and share
  2. Share your story, a caregiver story or a family members story and be featured on our website
  3. Talk to 1 person about ALSP each day during the month of March
  4. Illuminate a bridge in pink and purple for #BridgingTheGap
  5. Make a donation of $1 per day each day in March = $31
  6. If you are an ALSP family affected by the CSF1R mutation; consider genetic testing https://www.invitae.com/en/leukodystrophies
  7. Already diagnosed with the CSF1R mutation, consider participating in the Patient Registry at www.alspregistry.com and the Natural History Study at https://clinicaltrials.gov/ct2/show/NCT05020743?term=NCT05020743&draw=2&rank=1.
  8. Take a video of you and your friends saying “Adult-onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia”
  9. Most importantly, HAVE FUN!!!

 

 

 

September is Leukodystrophy Awareness Month

What is Leukodystrophy?

A group of over 50+ leukodystrophies make up a group of rare genetic disorders that affect the central nervous system by disrupting the growth or maintenance of the myelin sheath, which insulates nerve cells. These disorders are progressive, meaning that they tend to worsen throughout the life of the patient. Leukodystrophies affect children and adults.

Sisters’ Hope Foundation is the only non-profit dedicated to supporting those affected by ALSP, one of the 50+ leukodystrophies. Sisters’ Hope Foundation envisions a world where those affected by ALSP have support and knowledge, leading to a better quality of life and a cure.

Throughout this awareness month we will provide support group and educational meetings to help people understand this devastating disease and spread awareness about ALSP. By increasing awareness, our vision can become a reality through increased research and treatment options.

Help us with our awareness efforts through our #IAmALSP campaign.

Download #IAMALSP Poster

What is #IAmALSP: The #IAmALSP campaign is an opportunity to raise awareness and funds by sharing stories of patients, families, caregivers, and those touched by ALSP.

We ask you to help us spread awareness about ALSP by sharing your story, taking a picture with the I AM ALSP print-out of and sharing with your ALSP community.

How can you support the #IAmALSP campaign?

  1. JOIN the Sisters’ Hope Foundation social media pages.
  2. SHARE our social media posts and ask others to share.
  3. POST your photos with the #IAmALSP print-out or create your own sign.
  4. STORIES are a powerful way to spread awareness of ALSP. Share your story with Sisters’ Hope Foundation, our social media pages and include #IAmALSP. We would love to highlight stories and photos on our website.
  5. DONATE to Sisters’ Hope Foundation or FUNDRAISE for ALSP. Visit Ways to Give | Sister’s Hope Foundation | ALSP Community (sistershopefoundation.com)
  6. LEARN more about ALSP at:

Sisters’ Hope Foundation: Sister’s Hope Foundation | Sister’s Hope Foundation | ALSP Community (sistershopefoundation.com)

ULF Foundation: HOME | United Leukodystrophy Foundation (ulf.org)

ALSPInfo: ALSPInfo.com

We will get through this TOGETHER!