Rare is defined as “marked by unusual quality, merit, or appeal : DISTINCTIVE” and trust us, the life of a rare disease can be described as distinctive.
The rare and beautiful wonders of the world capture a sense of peace and awe when viewed.
The face of a rare disease or a young woman working her way through childhood with a rare distinction is heartbreaking.
A relative recently stated this journey as the unimaginable. That would accurately describe the acute pain and uncertainty of these inexplicable lesions and the new limp that Kelsey is just smart enough to conceal from anyone who does not know her well.
Rare is never a word we want to use for our child’s childhood nor our child’s health. Yet, here we are stunted with emotion for the lack of understanding these lesions bring to some of the brightest minds in the world.
Rare is lonely, rare is an emotional drain, and rare feels distinctively raw right now.
Please support our efforts and help us raise funds and awareness at our third annual gala: TICKETS.
Rare is defined as marked by unusual quality, merit, or appeal. We live through “rare” daily with Kelsey, some markedly easier than others. Sometimes it is the familiar that can help our “rare” become more usual. Today can be that day.
The EveryLife Foundation advocates for the rare disease community in Washington, D.C. A proposed bill, The OPEN ACT, that would help double the number of affordable treatments available to rare disease patients. This is a bipartisan bill that is supported by over 220 patient organizations. If put into law, it could bring hundreds of safe, effective, and affordable medicines to rare disease patients like Kelsey within the next several years. How? It provides incentives for drug creators to re-purpose therapies to help treat patients with life-threatening rare diseases. You can read For Rare Disease Patients: A New Pathway To Hundreds of New Therapies, in Health Affairs to learn more about The Open Act and the hundreds of new treatments it could provide for patients like Kelsey.
I was lucky enough to hear from Nancy Goodman, leading pediatric cancer advocate, founder, and executive director of Kids v Cancer, at the DADA2 Conference this past November. During her presentation, Ms. Goodman stated, “if there is a bill on Capitol Hill that will help your rare disease, then you should advocate for it!”
This is one of those times. If you feel inclined, please help our cause and thousands of others like us. You can click on this link to send a letter to your representative. It only takes about two minutes to complete the form.
SAVE THE DATE – DESIGNER BAG BINGO- JULY 13, 2017
St. Charles Borromeo * 176 Stagecoach Rd, Sicklerville, NJ 08081