It's Volunteer Week and Here's Our Next Highlight: Robin Swallow

Updated: Jul 3


Robin's two grandsons were diagnosed with SEPN1-RM in late 2014 after a terrible diagnostic odyssey that led them through three states and countless doctors. Soon after, Robin started researching organizations that support CMD, and came across Cure CMD, whose offices were located literally 10 minutes from her home! And so, since 2015, Robin has been our "boots on the ground" local volunteer, ensuring our office continues to run smoothly and efficiently. Robin not only dedicates several hours a week in the office (earning her own desk!), she also puts in countless hours from home. Some days, it's 4am and Robin's emailing, updating the registry, editing files. Some of her past and ongoing tasks include:

  • Curation of all genetic reports submitted to the CMDIR

  • CMDIR profile updates and duplicate profile consolidation

  • Biobank specimen ID cataloging and reporting of phenotypic/genotypic data associated with sample back to Coriell

  • Telephone and Email outreach to the CMD community (hey, pick up the phone when she calls you!)

  • Management of the CMD Scientific Publication Library

  • Management of the CMD Researcher Database

  • Thank-you letters to researchers publishing in CMD

  • Coordination of 2017 CMD SciFam Kids Camp, exhibitors, sponsors and speakers

  • Filing, copying, mailing, cleaning, organizing - anything and everything she is asked

Robin continues to inspire us with her dedication, and reminds our staff every day what we are working toward. Kids and adults like her two grandsons need us to continue working toward improved diagnostics, better care, and treatments. Words cannot express our gratitude for you, Robin - you keep us on track. Here's Robin introducing one of our SciFam speakers, and giving you a little insight into her passion for Cure CMD.


22 views

Connect with Us

Cure CMD

3217 E. Carson St. #1014
Lakewood, CA 90712 USA


+1-562-444-5656

General Inquiries:
Fundraising:

Science:

Research Grants:

About Us

Copyright © 2020 Cure CMD

Cure CMD is U.S. registered 501(c)(3) non-profit organization. Donations are tax deductible to the
extent allowable by law.  U.S. Federal Tax ID: 26-2640975