Join the Neuromuscular Disease Foundation’s #RareReality Campaign

Tomorrow is Rare Disease Day! There are 7,000 rare diseases and disorders that affect about 30 million Americans. Three hundred million worldwide are affected by rare diseases and 95% of those with rare diseases don’t have FDA-approved treatment options or cures.

Read about all what you can do to raise awareness here.

Joining many efforts this Rare Disease Day, is the Neuromuscular Disease Foundation (NDF), whose mission is to enhance the quality of the lives of people living with GNE myopathy through advocacy, education, outreach and funding critical research focused on treatments and a cure.

GNE myopathy is a rare, progressive muscle disease that affects both the upper and lower limbs and leads to an inability to properly synthesize sialic acid. Sialic acid helps muscle proteins function properly. When sialic acid levels are low, the muscles begin to weaken, resulting in loss of strength and muscle function.

For their part on this Rare Disease Day, the NDF is highlighting the rare realities of living with a rare disease with their #RareReality campaign.
Get involved by sharing your own rare disease story, posting a photo depicting your reality, purchasing awareness gear, and/or a mix of all three! Here is the NDF’s handy how-to guide for their #RareReality social media photo share:

1. Click to download the #RareReality Mini Poster

2. Add your statement or rare disease to the poster

3. Take a picture with the poster

4. Share your picture on social media using the hashtag #RareReality

5. Tag the NDF so they can see it and share it! (Go ahead and tag @PatientWorthy too, and we will share it as well!)

#RareReality isn’t just a platform for patients, it’s a platform for rare family members and caregivers alike, to share their truths and help bring attention to both the challenges and strengths of the rare disease community by offering a glimpse into life with “rare.”

Below is an excerpt from Jen, who shared her story with NDF:

“Life had always been comfortable for me… Everything was going according to plan. But this news? This diagnosis? This moment? This was not part of the plan. This was not the way my life was supposed to go… I was 29 years old and a model of good health. But over time, I noticed something was off. I started tripping more often. I started having trouble running. And then trouble jogging. And eventually, I couldn’t do either. I bounced from sports medicine doctor to podiatrist to physical therapist to neurologist to, finally, the Persian specialist who told me I had GNE myopathy.”

Jen continues, however-

“Today, though I am not dying… I have gone from experiencing only lower body weakness to losing a significant portion of my upper body strength. I have had to tolerate physical and emotional discomfort in ways I never believed I could. And yet, right alongside this journey, I have also had two kids, maintained a successful private practice and become a patient advocate — educating others about [GNE myopathy] and raising awareness around what it’s like to live with a disability… True strength is having a non-distorted perception of how bad it is and accepting it; locking eyes with the beast of loss and pain without turning away. Strength is being able to let in the sadness, fully and wholly, and still, keep moving.”
Follow Jen’s blog here and read more stories as a part of NDF’s #RareReality campaign here.

Patient Worthy is an official Friend of Rare Disease Day! Visit our page and don’t forget to #ShowYourRare.

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