Running for Rare in the 2019 Boston Marathon
The 2019 Boston Marathon is on Monday, April 15th! Dr. Lorenzo Botto is partnering with RUN as his community partner!
Hello! My name is Dr. Lorenzo Botto. I am running to help families with rare and undiagnosed diseases get a faster diagnosis and better care.
As a kid’s doc and geneticist coordinating the Penelope Undiagnosed and Rare Disease program at the University of Utah, I’ve seen too many diagnostic odysseys, too many families in which diagnostic testing was withheld because of funding and coverage, too many kids that could do better with care that is driven by precision diagnosis.
I work with a fantastic team here at the University of Utah, with a wonderful local organization (RUN) and its dedicated leader, Gina, and with incredible parents and advocates (Steve and so many others)
Thank you for anything you can do to help me raise donations and raise awareness for NORD and the larger community – can I ask you for a simple first step, sharing this fundraiser with your ten best friends ?
Our goal is to raise $6000 by April 15 – and we are 25% there!
This means raising more than $1000 a month going forward….
But every little bit helps!
Link: Donate to Running for Rare with Dr. Lorenzo Botto
Thank you to Dr. Lorenzo Botto for your hard work and dedication to the undiagnosed rare disease community and to the entire rare disease community. Since the day we met you in 2015, you have been such a blessing to our family. We look forward to continuing on this journey with you to raise awareness and funds for the undiagnosed rare disease community. Thank you to the generosity of all of our donors. Thank you to the National Organization for Rare Disorders (NORD), the Undiagnosed Disease Network (UDN) and to the entire team at Running for Rare!
Why this means so much to our family:
The Szajnuks and the Undiagnosed Diseases Network (UDN)
UDN Participant 020 – Gina Szajnuk
Much love, Gina Szajnuk
National Organization for Rare Disorders, Inc. wrote:
For the 12th consecutive year, patients and advocates will run as members of the Running for Rare Diseases Marathon Team in support of the National Organization for Rare Disorders (NORD). NORD is dedicated to supporting individuals and families impacted by rare disease and the organizations that serve them through programs of education, advocacy, research and financial assistance services. Rare diseases impact the lives of 30 million Americans – two-thirds of whom are children.
Running for Rare Team
Through Running for Rare, NORD’s signature charity marathon team, runners join together to raise awareness for rare diseases while fundraising to support undiagnosed patients. This special team is made up of passionate and committed individuals seeking to make a meaningful difference for the rare community.
The funds raised by the Running for Rare Team will support the NORD/Undiagnosed Diseases Network (UDN) Patient Assistance Program. This program provides financial assistance to families who have exhausted all other alternatives for seeking a diagnosis. NORD will help cover the basic diagnostic testing needed for patients and families to apply into the Undiagnosed Diseases Network.
Join the Team!
When you join the Running for Rare Team (Running4Rare), you are joining a group of individuals who are passionate and committed to an important cause. This grassroots team of 4 grew to more than 100 runners in 2015, raising over $500,000 over the last 9 years. As any past team member will tell you, being part of this team is a unique, life-changing experience.
The team is composed of dedicated runners from around the world who will not only spend their personal time training for the marathons, but also host numerous events to raise funds and engage people in the cause. (Learn more about the runners at: www.running4rare.org)
Runners interested in learning more can contact the Running for Rare Team at runningteam@rarediseases.org.
On average, it can take a patient 5-7 years to receive an accurate diagnosis, at which time 95% will be told there is no FDA approved treatment or ongoing research to learn more about their disease. The funds raised from the Running for Rare Diseases Team will support NORD’s Undiagnosed Diseases Program; helping individuals to receive a diagnosis from the National Institutes of Health (NIH). Donations in support of this campaign will be tax-deductible to the extent permitted by law. NORD has received the top (4-Star) rating from Charity Navigator, a leading independent evaluator of charities. The individuals and families helped by NORD often have nowhere else to turn for assistance. Your support of this campaign is very important to them.
A special thank you to all of the runners that have run for RUN! Noah Coughlan, Jesse Marimat and Andrew Scholte. We love you!
ABOUT UDN
The Undiagnosed Diseases Network (UDN) is a research study backed by the National Institutes of Health Common Fund that seeks to provide answers for patients and families affected by these mysterious conditions.
How to Apply to the UDN: https://undiagnosed.hms.harvard.edu/apply/
ABOUT NORD
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 280 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
ABOUT RUN
RUN stands for the Rare & Undiagnosed Network. We’re a group of advocates, patients, families, researchers, and healthcare providers who share the same mission and vision: To empower rare and undiagnosed patients and their families with genomic information and community through advocacy, networking and support.
Contact information:
Gina Szajnuk (Zanik)
Co-founder and Executive Director
E: ginaszajnuk@gmail.com
C: (310) 883-4353
To Read: “What is the hardest part of being undiagnosed?” by Gina Szajnuk
To Read: “Undiagnosed is a Diagnosis” by Ava and Gina Szajnuk
To Read: The Szajnuks Journey
