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$2,500
goal
$5,593
Raised so far

224 % to goal

National Organization for Rare Disorders, Inc.

Boston Marathon 2013

Donations as of October 31, 2014:

$3,032.30 Raised Offline
$2,560.20 Raised Online
$5,592.50 Total Raised

Boston Marathon 2013

Thank you friends and family for visiting my fundraising page and learning a little more about our cause.

Growing up in Hopkinton has always been an exciting day on Marathon Monday. Every year I would watch the runners in such admiration, and always leave stating that SOMEDAY I will do the Boston Marathon.  Well, this will be my day! Alongside 15 other Genzyme employees and 1 patient partner from last year, I will embark a grueling 26.2 miles to complete the 117th Boston Marathon. Along the way, it is my goal to raise awareness and funds for those whose lives are impacted by rare disorders. The National Organization of Rare Disorders (NORD) is a charity that embodies Genzyme’s research and overall mission of supporting those patients afflicted with rare diseases for which there is an unmet need for treatment and support.

I have been fortunate enough to be paired up with my patient partner Ben, a 16 year old boy who has Congenital Hyperinsulinism (HI). HI occurs as a result of over-production of insulin in the pancreas, causing low blood sugar (hypoglycemia). Brain damage can occur if the condition is not recognized or if treatment is ineffective in preventing hypoglycemia. Stroke-like symptoms, cerebral palsy and blindness may also be caused by hypoglycemia. Read more about Ben and his story. http://rarediseases.org/patients-and-families/patient-stories/ben .

Ben’s mom, Julie happens to be the executive director of Congenital Hyperinsulinism International (CHI). After speaking with her over the phone, she mentioned there was a patient in Hopkinton that would like to be partnered up with a marathon runner for NORD. Coincidentally this family has children that go to school with my children. Not only did I gain an additional patient partner, but a new bond with the family. Christopher (8 years old) has joined my team to advocate his hurdles with HI. Read more about Christpher: http://runningforrarediseases.org/

NORD is the consumer organization that advocated for enactment of the Orphan Drug Act of 1983. They monitor implementation of the law, especially encouraging research and development of new treatments for rare “orphan” diseases. Their most important mission is to assure that research on rare diseases is widespread and productive, leading to medicines, biologics, devices and diagnostics that will help patients with rare diseases. They support the incentives in law that stimulates companies to do orphan drug research. They want safe and effective products to get to market as quickly as possible. This legislation paved the way for pioneering companies like Genzyme to develop innovative products to treat very rare diseases. There are now hundreds of companies researching and developing therapies for rare diseases.

The Genzyme team has raised more than $180,000 over the five years running for NORD. Please help us make this year just as successful. No donation is too small. We appreciate your support. I truly appreciate you taking the time to read this and hope you have learned a little more.

To make a donation, please click on donation link at the top of the page. All donations to NORD are tax deductible.
To learn more about the Genzyme Marathon Team, Go Directly to Genzyme Marathon Team Website (http://runningforrarediseases.org/).

 

Supporters

Comment Donation
Michelle Marzi
$30.00
BoseLover23940
$95.00
Anonymous
$775.00*
Bernadette Markey Best of luck, Jen Ted. You're ready, prepared an fit. Congrats!
$75.00
Holly Dressler Good luck Jen. You're going to do awesome
$50.00
John & Pam Jen-- So Proud of you!!
$50.00
Stephen Miller Wishing you a good time for a good cause. I'll be following you.
$100.00
Mike & Stacey Best of luck to you! Do your best!
$20.00
Jen & Andy We are so proud of you and the cause you are running for!
$100.00
Jeff and Eric Freeman We have a special friend in our lives who has made us aware of this cause and we are happy to help out as best we as best we can.
$50.00
Rebecca & Joe Serriello You're AMAZING!!
$20.00
Bubba and Nannie Terry
$25.00*
Anonymous
$50.00
Pat & Pamela Manning Great work Jen! I will see you at the finish line (of course a few minutes behind you)!
$70.00
Sam and Danika Martin Good luck Jen!
$100.00
Carol & Dave Deveuve
$100.00*
Sherborn Inn Fundraiser Thank you for coming out to support us and this great cause!
$1,033.00*
Kenneth Munroe Jen good luck running your first Boston Marathon and supporting patients with rare diseases.
$50.00
The Therans
$30.00
Batman Headphones!
$100.00
Kate Skelly Good luck Jen!
$70.00
Dan and Kirsten Terry
$50.00
Sherborn Inn Fundraiser Raffle Items Thank you for your support!
$122.00*
David and Kristen Ryan Good Luck and have fun on Marathon Monday. Just remember that every step you take is one less to the finish line.
$170.00
Ann Brady & Todd Cestari Good luck, Jen. You are an inspiration to us all!
$100.00
Lisa & Adam Nichols Good luck Jen! You're making great strides for something so important! Keep up the good work!
$70.00
Kathleen Dustin
$70.00
Jack and Lisa Prior
$70.00
Sandy and Shane Bowles
$70.00
Liz and Bob Burke
$70.00
The Bernardin Family
$50.00
The Leccese Family Good Luck Jen!
$100.00
Don, Katie, Regan & Aiden Keavany Go Jen! You are a rock star! P.S. Don't tell Donny I donated ;)
$70.00
Pat & Pam Manning Good luck Jen!
$70.00
Rare Disease Day Bake Sale/Raffle Thank you once again Genzyme for your generous donations!!!!
$321.00*
Bill Burchard We know you'll finish no problem, now for a fast time!
$40.00
Paul & Beverly Gedutis
$125.00*
Carol Tedstone
$100.00*
Shannon Good luck Jen! You will do great!
$94.00
Nance Moran Go Jen and Kai and NORD team!
$20.00
Bakerylover
$10.00
Valentines Day Bake Sale Thank you for your support Genzyme!!!
$431.30*
Anonymous GO, JEN! NYC WILL BE ROOTING FOR YOU! LOVE FROM AUNT ANN
$126.20
Ed Johnson & Anne Burtenshaw Thanks for running Jen!
$100.00
Anonymous
$50.00
Pj Keep up the good work jen!
$100.00

Donation Summary

Raised Offline
$3,032
Raised Online
$2,560
Total Raised
$5,593
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