The Running for Rare Team Crossed Another Finish Line

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On Monday, April 18, seven members of NORD’s Running for Rare team stretched their legs and put their sneakers to the pavement to take on the Boston Marathon! During the race, NORD staff members Jaime Pacheco, Ed Neilan, Julie Manus, Amanda Thomas and 36 individuals were present and could be heard loudly from the cheer section.

In addition to running, NORD’s Boston Marathon team is paired with a community partner in the rare disease space to raise money for the Undiagnosed Diseases Network (UDN).

Thank you to our Boston Marathon team:

  • Jorge Beunaventura was able to earn an Abbott Medal by completing six world marathons thanks to being a part of NORD’s running team! Support Jorge’s fundraiser by clicking here.
  • Lena Ceballos ran the 2021 NYC and Boston Marathons for NORD and is dedicated to running for her community partner Declan, who is three years old. Support Lena’s fundraiser by clicking here.
  • Aprill Lane who runs for her son Mark who has a rare disorder. Support Aprill’s fundraiser by clicking here.
  • Liri Mustafa is a college student who has partnered with Shaylee, a Pompe disease patient. Support Liri’s fundraiser by clicking here.
  • Graciello Reyes is from the Phillipines and was partnered with Nicole, a PNH patient and licensed social worker. Support Graciello’s fundraiser by clicking here.
  • Robert Szvizzero is a law enforcement professional who runs for his Uncle Joe who has PLS. Support Robert’s fundraiser by clicking here.
  • Vivienne Wei Xiong is a scientist for Regenxbio and is also partnered with Shaylee. Support Vivienne’s fundraiser by clicking here.

Interested in Running for Rare? You can apply to be added to the 2023 NORD Running for Rare Boston Marathon waitlist. Bibs will be distributed in late fall and selected runners will be responsible for their mandatory fundraising minimum of $7,500, must wear NORD apparel while running, and be paired with a community partner. View the website to learn more.