BENEFITING: WAKE UP NARCOLEPSY INC
ORGANIZER: WAKE UP NARCOLEPSY INC
EVENT: 2016 Boston Marathon
EVENT DATE: Apr 18, 2016
Thank you for visiting my page and I appreciate any support you can provide to help me reach my $18,000 fundraising goal.
I am running the 2016 Boston Marathon to support Team Wake Up Narcolepsy, #TEAMWUN. This will be my sixth Boston Marathon. I ran twice for fun in my 20s and three times in my 40s for #TEAMWUN. Now I am 50 years old, and I am excited to be back on the team. I plan to use this opportunity to help continue to change the conversation about narcolepsy and to raise much needed funds for research.
Almost eight years ago, my son and our family started our journey with narcolepsy. I say “family” because narcolepsy becomes part of your family, it is always there - sometimes very visible, but always lingering.
March 2008, my oldest son, Thomas, started showing signs of narcolepsy at age 10 – sleeping up to 18 hours/day, falling down and losing muscle tone in all of his limbs, insomniac tendencies at night and rapid weight gain – he missed three straight weeks of school because he could not stop sleeping! We had no idea what was happening to our beautiful boy. We visited doctors looking for answers, jumped through insurance loopholes and broke down any other barriers until three months later we finally had an accurate diagnosis. The doctor reported it was narcolepsy and cataplexy, caused by an autoimmune reaction from a recent strep virus. We later realized how “lucky” we were that he was diagnosed within just three months from the onset of his symptoms and learned that it can take up to 10 years or longer to get an accurate diagnosis.
In that same year, 2008, I co-founded Wake Up Narcolepsy (WUN), a 501c3 non profit organization dedicated to improving the lives of people with narcolepsy by accelerating research to gain a deeper understanding of narcolepsy and provide better treatments for the medical disorder.
Fast forward to January 2016, my son, Thomas, is now 18 years old (thus my fundraising goal) and a freshman in college. He is managing his narcolepsy the best that he can and is fortunate that he has a strong internal drive that his helping him navigate his way through life with this affliction.
Also, Wake Up Narcolepsy has become the leader for patient organizations in the narcolepsy community. We have aided in research that has resulted in significant findings. Our education and awareness programs have allowed us to educate and increase narcolepsy awareness throughout the US and beyond through national and local media outlets, physician conferences & mailings, school/medical personnel presentations and talking to the general public.. Knowledge is power and the more people we reach and educate about narcolepsy the more empathy and understanding will be gained about this extremely complex, and severely misunderstood medical disorder. There is still so much work to be done!
I am grateful for your help and interest.
Thank you from the bottom of my heart!!!
Gifts may also be mailed to: Wake Up Narcolepsy, PO Box 60293, Worcester, MA 01606
WAKE UP NARCOLEPSY INC wrote -
Narcolepsy is a serious, severely misunderstood and misdiagnosed medical disorder in desperate need of funding for research. The funds raised during the Boston Marathon Fundraiser will help advance the understanding of narcolepsy to improve the lives of people suffering with narcolepsy.
2016 marks the seventh consecutive year #TEAMWUN is heading to the starting line in Hopkinton. Beginning in 2010, each year the team has grown in both the number of runners and the average amount of donations raised by the team to benefit the work of Wake Up Narcolepsy.
We are deeply gratified by the generosity of our donors, many of them ongoing contributors to our shared cause. This support enables us to help speed narcolepsy diagnosis through greater awareness and provide research funds for improved treatment, prevention, and a cure.
And we welcome the untiring efforts of our WUNners to both train for this historic race and reach out to friends, family, and colleagues for support. Their success in generating contributions not only funds our efforts to accelerate research; their efforts themselves raise awareness of narcolepsy, a devastating sleep disorder affecting 200,000 Americans and millions of people worldwide.
Learn more at http://www.wakeupnarcolepsy.org.