A MESSAGE FROM Boston Marathon 2022 - Graciello Reyes, in support of the National Organization for Rare Disorders
I'm excited to finally share that I was invited by an organization to run the Boston Marathon next month! It's almost impossible for slow runners like me to run a 3:00 hour marathon and qualify to run Boston, but I am grateful for the support of a community to take this rare opportunity and fulfill this ultimate dream!
In return, I have committed to support this community by being an ambassador of their cause. The National Organization for Rare Disorders (NORD) is a non-profit organization providing support for individuals with rare diseases by advocating and funding research, education, and networking among service providers. For the past weeks, I have been in touch with the organization to know more about what they do. Through this, I got to know my community partner, Nicole Cameron.
Nicole Cameron, who is a descendant of immigrants from the Carribean Island of Guyana, and who has since lived in the US, has supported herself and her family by taking three jobs at a time - working as a social worker for child protective services, tutoring, and doing clinical work for mental health. Nicole bore the brunt of her hard work when one day, after initially ignoring the signs, she was already blacking out and couldn't breathe. After undergoing several tests and surgeries, her doctor informed her that due a genetic mutation possibly triggered by extreme stress, which she has been experiencing at work, she acquired Paraoxysmal Nocturnal Hemoglobinuria (PNH), a rare disease. Since this disease is one in a million, it was extra difficult for Nicole to seek help to get treatment. On top of that, she lost her job because she could not anymore fulfill the physical demands of her work. Worse, she was told that to avoid complications, she had to take a weekly experimental treatment similar to chemotheraphy (called Soliris), which cost $10,000-12,000 at a time, and later an intravenous drug (Ultomiris) which costs even higher at $17,500 - amounts which she definitely could not afford.
This was when NORD came in and offered to support her treatment for free, and gave her access to the latest medicines that may treat her condition. Nicole is hopeful that with contributions and support to NORD, researchers can develop and release a pill for patients like her, which would make a more sustainable treatment for the longer term.
Let us help NORD fulfill its mission of supporting people like Nicole who have so much to offer but are impaired by rare diseases which were out of their control. You may send your donations through my fundraising page in the link below. The link is safe and secure. Any amount will go a long way in supporting rare disease patients, but if you wish to donate a more substantial amount, wish to use the donation as a tax deductible expense, or avail of your employer's matching gift program, you may contact me separately and I'd be happy to make arrangements.
To those who have already donated, thank you very much!
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