Help me in supporting National Organization of Rare Disorders for Cocodona 2026! Make sure you add something like: For Cocodona, I've agreed to raise money to support Natonal Organization of Rare Disorders. For nearly 40 years, NORD has been a national leader in voicing the needs of the rare disease community, driving federal and local policies, advancing medical research, raising awareness among key stakeholders and the general public, and providing health and family services for those who need them most. This cause is important to me because NORD has helped and supported my family financially and emotionally. My wife was diagnosed with a rare autoimmune disease that started as a sinus infection that suddenly left her blind in one eye and partially blind in the other eye. The months that followed were filled with fear, anxiety, stress and sleepless nights. We were either driving to or from a doctor’s appointment receiving treatment for a still unknown / undiagnosed problem, or on the phone with insurance and making more appointments. There was a day when she was receiving Intravenous treatment in one arm and at the same time Mayo was drawing blood from other arm to test other possible causes for the onset of bilateral optic neuritis. The treatments were working, but there was no acuity, or color with her vision. It would be 6 months before her vision was back to a point where she could independently navigate unfamiliar areas or drive a car. Her milestones were measured in less doctors’ appointments this week or the ability to care for and enjoy time with the children. What followed was almost harder. We received a diagnosis, now we knew what to do and how to treat. The rarity meant there is no “FDA approved” course of treatment, which means Blue Cross Blue Shield doesn’t have an ICD-10 code and would deny coverage of any further doctors' visits or treatments associated with the disease. The burden of the treatment cost of $60,000 per month would fall on us alone. So, the months that followed were filled with recovery, hospital and doctors’ bills, and countless hours on the phone begging insurance, reaching out to different organizations, even the manufacturers of the drug needed for assistance. This was met with callous rejection, depression, and an impending doom of another autoimmune attack that wouldn’t be treated and would leave her permanently blind, among other complications. The demoralizing feeling of complete ineptness that had to be swallowed because she and the children are looking to you for hope and continued faith is hard to describe. The nights were filled with maybe’s, what if’s and trying to rally for the next day’s round of rejections. The first time we were able to have a restful night came 8 months later when NORD contacted us. They understood what we were going through, the not so unique and individual trial that we were living in and responded with we are here to support you. The team of people working for NORD listened to our story, they empathized with our trail, and they acted on our story, not a script. They made phone calls for us, they walked us through the paperwork, and they agreed to support our family with the ongoing care needed. They were in constant contact and understanding of the ever-changing landscape of finding the right team and care to get and stay healthy. NORD have been a huge blessing to my family, and we are grateful for everything they have done for us. A donation of any size or spreading the word of this event will help get me across the finish line, can I count on your support?
Double Your Donation Today! Does your company have a gift-matching program? Check with your HR department to see if your company matches employee gifts. If they do, take advantage of this opportunity to double your contribution today!
Please note that matching gifts must be received 2 weeks prior to the race day to be counted towards your fundraising goal. Donations must also have the athlete’s name associated with the donation so we can allocate funds accordingly.
The Wander Project Tax ID number is: 83-1778644
Offline Payment Instructions
If you would like to donate to this fundraiser offline please follow the directions below to ensure it supports their charity bib.
**Please note all mailed checks, matching gifts, or donor directed funds must be made out to Wander Project. Once we receive them they will be added to their fundraiser for this designated charity. Please include the first and last name of the fundraiser you are supporting so we can ensure your donation is matched to the correct person.
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Wander Project is a U.S. tax-exempt 501(c)(3) nonprofit organization. All donations are tax-deductible to the furthest extent of the law. Tax ID 83-1778644
