April 20, 2016
BENEFITING: National Organization for Rare Disorders, Inc.
EVENT: 2016 Boston Marathon
Dear Friends and Family,
Imagine for a minute going to the doctor and having him tell you that you have high cholesterol, let’s say 220, with an LDL (the “bad” cholesterol) level of 160, and that you should do something about it; maybe diet and exercise, maybe a prescription for statins. That is a reality that millions face every year, but it’s quite common and usually manageable if the correct steps are taken.
Now imagine that you are 17 years old, or 20, or 25. Imagine that you are athletic, and eat the right foods. Now you are told that your cholesterol is greater than 600. And that number is for the LDL only! This is a reality that a Homozygous Familial Hypercholesterolemia (FH) patient faces. Even heterozygous FH patients can show plasma cholesterol levels of >230 as children. The effects of this disease can be devastating, with young men and women requiring heart surgery and stent placement to restore sufficient blood-flow to the heart, physical rehabilitation and statin therapy.
This year I am running the Boston Marathon in partnership with two inspiring young people who are affected by FH; Christian, who is a 23 year-young college student, who had stents implanted to unclog two major arteries to the heart, and Max, a local 9 year-young boy who had cholesterol levels in the 800s upon diagnosis. I am part of a team (Running 4 Rare) who are running to raise money for the National Organization for Rare Disorders (NORD) NIH Undiagnosed Diseases Program (UDP). As many rare disease patients must endure a long odyssey before finally receiving an accurate diagnosis, the entire Running for Rare Diseases team is passionate about enabling early diagnosis for those living with mysterious, rare conditions. I have a fundraising goal of $5000.00 for this effort.
How you can help:
- Donation: A donation will go a long way, and any donation to NORD is tax deductible. Moreover, you have the ability to allocate the money to specific rare disorders, which can stimulate research for specific rare diseases. To facilitate fundraising we have set up a team page and personal fundraising page for the Running For Rare team. My page can be found here:
- Company Match: Many companies have a matching gifts program. Please make the extra effort to take advantage of this extra funding to potentially double your donation! Also, please let me know if you are applying for a company match so that I can apply this to my fundraising goal.
- Get the word out: Please forward this to friends and family who may want to contribute, and help people who are suffering from rare diseases get the support and research funding that is desperately needed!
Thank you for your time!
Alone we are rare. Together we are strong.
National Organization for Rare Disorders, Inc. wrote -
Marathon runners and rare disease community members team up to support all 7,000 rare diseases and help undiagnosed patients find answers. The funds raised for NORD will support the NORD NIH Undiagnosed Diseases Program (UDP). As many rare disease patients must endure a long odyssey before finally receiving an accurate diagnosis, the entire Running for Rare Diseases team is passionate about enabling early diagnosis for those living with mysterious, rare conditions.