Working at Global Genes changed my perspective from day one.
Rare disease can victimize you, make you feel helpless and hopeless. If doctors didn’t know how to treat me–who did? If pharmaceutical companies hadn’t produced a drug for me–who knew if they ever would?
But Global Genes opened the curtain to a world that only patients in the trenches often see. Their organization wasn’t just a hope and awareness generating machine (not that raising awareness wasn’t a good thing) but it was more than just circulating information. It was an organization that was picking people up from the floor, putting the tools in their hands and saying, “Okay, it sucks, but now we have to do something about it.”
Teaching patients how to be their own advocates–how to communicate with their doctors, how to reach out to pharmaceutical companies, how to lobby for new laws surrounding their availability to treatments–that was part of the mission. Global Genes also raises funds for projects like genetic testing, white papers, toolkits, and rare concierge services with a genetic counselor.
We also work with all of the smaller rare disease nonprofits. Including two that are very close to my heart:
Founder Lauren Stiles is basically a machine. She’s been a powerful advocate for all people with POTS–getting the most accurate information out there when patients need it most.
Dysautonomia International provides the pillars of Awareness, Advocacy and Advancement. Beyond raising money for research, educating physicians, and providing unparalleled resources for patients under the broad spectrum of a dysfunctional autonomic disorder, they also host a yearly conference where patients can interact with other patients and tell their stories to doctors who want to learn and explore how to better treat this disease. Today they asked for your help supporting their efforts:
“It’s Giving Tuesday, a day dedicated to giving back during the holiday season. You can help Dysautonomia International reach our goal of raising $31,000 in the 31 days of December.
With your support, in 2016 we will expand our cutting-edge POTS research program, physician education events, support groups, and lobbying on Capitol Hill. We will continue our popular annual conference, which brings together patients, families and the top experts in the field of dysautonomia for a weekend of learning, fun and advocacy.
Your tax-deductible contribution will improve the lives of dysautonomia patients. Give today to create a world free of dysautonomia!
Happy holidays to you and your family from all of us at Dysautonomia International.”
Jeffery Modell Foundation
When I was diagnosed with PIDD–my very first google search brought me to this organization. It was with tears in my eyes that I read about what was happening to my body–and to the scores of other young adults who were experiencing the same thing. They directed me to my first immunologist, sent me info in the mail, and embraced me with the promise that someone was definitely out there, looking for ways to improve my life.
Today the organization asks:
“Join the Jeffrey Modell Foundation and GivingTuesday by posting a picture of yourself creating bubbles on Facebook! Tag us and add the caption “I’m joining the Jeffrey Modell Foundation to help “Burst the Bubble” about PI! Learn the 10 Warning Signs of Primary Immunodeficiency and much more by visiting www.info4pi.org ! #JMF #GivingTuesday””
There are scores of other nonprofits I’d like to introduce you to, but for today I’ll highlight one more. I don’t have EB, but from what I’ve learned from the amazing organizations representing these patients: it takes a strong spirit to persevere with these kinds of symptoms.
Let me introduce you to the EB Research Partnership.
Here is a video made by the organization.
Here is a link to our post about it on Global Genes where you can reach the organization and donate to their efforts.
So please, if you have a friend or family member with a rare disease and you’re not sure how to help–donate to one of these organizations to help them get one inch closer to a treatment or a cure.