Each summer advocates for rare diseases take advantage of longer daylight hours and use the opportunity to showcase the hopes, needs, and wants of people with rare diseases such as, in this instance, spinal muscular atrophy (SMA).
August is officially SMA Awareness Month. Therefore, during the month of August, SMA advocates offer various methods of creating greater awareness throughout the country to get closer to its goal of finding a cure for SMA and the many forms of the disease.
Several diseases may sound familiar, but people with the disorder and their families are striving to manage distinct forms of SMA stemming from mutations in chromosomes.
SMA is defined as a progressive neurodegenerative disorder affecting motor nerve cells in the patient’s spinal cord. A deficiency in a protein called sensor motor neuron (SMN) causes SMA with resulting disruption of the muscles used for eating, crawling, walking, and breathing.
We Invite You to Tell Your Story
If you have an interest in sharing your story and being virtually interviewed by one of the members of CureSMA.org, email [email protected] and indicate that you would like to be interviewed. A team member will assist you in constructing your story.
The SMA website (see above) outlines specifics about approved treatments and drugs.
Donate or Fundraise to a Cure SMA Event
Attend an event or fundraising. Especially the SMA Walk-n-roll events with members of the community throughout the country. These funds are a major boost to SMA research.
Support SMA Research
Members of the SMA community will readily agree that without donations from the thousands of loyal supporters, the progress achieved to date would never have been possible.
Shop and Support
Every purchase funds SMA education, research, and programs. A variety of accessories and wearables are available including an awareness kit with promotional gifts to be shared with family and friends.
Cure SMA has connected with iHeart Radio and Hubbard Radio in Chicago and invites you to tune in during the month of August.
Don’t miss the 2023 SMA candle lighting in memory of those MSA patients who died from the disease. This year the candle lighting will occur on August 12th. Don’t forget to share your candle-lighting photos on social media.
Purchase a Cure SMA candle for the 2023 Candle Lighting
Each year, the community lights candles in memory of those who have passed away from SMA. The annual candle lighting occurs at sunset on the second Saturday of August. This year’s candle lighting will take place at sunset on Saturday, August 12th, 2023. Don’t forget to share your candle-lighting photos on social media by tagging @CureSMA and using #SMA awarenessmonth #CureSMA.
Also, Awareness Lightings at popular landmarks are a unique way to call attention to the cause. Don’t miss the opportunity to take a photo. Post it to social media or send it to [email protected].
Advocate through the new Advocate sign-up center and indicate the advocacy issues you find of interest.
The SMA Community needs your help.