The Rare Disease Foundation just made its ninth call for Microgrant research proposals. Successful applicants will be funded after the November Lace Up for Kids fundraiser organized by UBC REC student volunteers.
It’s that time of the year again – when the Rare Disease Foundation’s call for Microgrant proposals is released. This program is one of the Rare Disease Foundation’s biggest accomplishments. The world of Rare Disease does not have many champions to help fund and facilitate research. This is an opportunity to change that typical medical paradigm. Through targeted fundraising and wonderful clinicians and scientists, the Microgrant program is successfully accomplishing the research goals of directly improving patient care. Since the formation of the Rare Disease Foundation in 2009, 128 Microgrants have been funded for a total of $417,824.
The success of the Microgrant program is not only measured in terms of the funding directed to patient focused research. The program can also boast the success of fabulous ‘out of box’ clinicians and scientists. They have taken these grants and turned them into real world solutions to problems facing families that are living with complicated rare diseases. Four therapies for rare diseases have been developed as a direct result of a Rare Disease Foundation Microgrant.
“As a recipient of a 2009 Rare Disease Foundation Microgrant, I was able to leverage my clinical observations and perform a study that led to a new treatment for children with this severe condition… This contribution to the medical literature will offer a meaningful alternative to children who have exhausted the current standard of care,” Jugpal S. Arneja, MD.
Another such success was found in the field of immunodeficiency. In this case, clinician-researchers were even able to offer a previously undiagnosed family a diagnosis for their child. “The 2010 Rare Disease Foundation Microgrant allowed us to access novel state-of-the art tools in order to diagnose a very rare immune deficiency… We were able to give a frustrated patient and the family a diagnosis and more importantly, it allowed us to shift our clinical care from not just treating symptoms of the disease but being able to offer a cure… We would not have been able to start this journey without the support of the Rare Disease Foundation and we are very grateful for the support,” Jacob Rozmus, MD, PhD, Postdoctoral Oncology Research Fellow Schultz Lab.
A Rare Disease Foundation Microgrant has also led to practice changes, including developing a way to screen for 75 treatable causes of intellectual disability. “Our evidence-based approach to rare diseases, made possible by a Rare Disease Foundation microgrant, formed the basis of a large research and care project: The Treatable Intellectual Disability Endeavor in B.C. which was recently funded by the BC Children¹s Hospital Foundation as the 1st Collaborative Area of Innovation with $2.25 million,” Clara van Karnebeek, MD, PhD.
There is an opportunity to be a part of this pioneering program and affect change in this lifetime! This year the Rare Disease Foundation is lucky to have partnered with UBC REC and BC Children’s Hospital Foundation for the Lace Up for Kids event. The goal is to raise $100,000 by skating 25,000 laps on November 22nd. This money will go directly to support the BCCHF’s Translational Research Fund that directly supports the Rare Disease Foundation’s Microgrant Research Program.
To get involved please check out www.laceup.ca . You can help in many ways. Join a team, create a team, or donate to an existing team. Every contribution matters and is makes a real difference as all donation from the event will be used directly for rare disease research. Thank you so much for being a member and/or friend of the Rare Disease Foundation.