Research update: Wobbly Feet Foundation continues to beat national standards by donating 92% of every dollar towards our mission!
2016 was a most successful year with Wobbly Feet receiving over $95,000!! With these funds we have increased our contribution towards the A-T Children’s Project’s (www.atcp.org) Global A-T Data Platform. This donation has been immediately put to work with the launch of this world-wide research study aimed at sequencing the individual genome of all children known to be diagnosed. The results of this study will give insight into any genetic variations that compensate for mutations in the A-T gene, possibility leading toward a drug treatment able to reduce the most devastating effect of A-T, the progressive neuro-degeneration. 110 A-T kids, including Connor, have already been sequenced and results are now being compiled. This study brings us new hope!
Additionally, we were able to continue funding of on-going research projects and provide grants to families of a child diagnosed with A-T to assist in payment of uninsured medical expenses aimed at improving their quality of life. Such grants include a chair lift to help a young man with A-T transfer from the 1st to the 2nd floor of his family home where his bedroom is, assist a family to redesign their home pool for accessibility so their 2 wheel-chair bound sons may receive at-home water therapy and for a single mom whose young daughter with A-T. & seizures could pay down the co-pays of the extensive medical bills pilling-up due to numerous hospital stays.
Donate knowing your dollars will make a difference! Visit our GuideStar profile for full annual details http://www.guidestar.org/profile/27-1068774
Funded research projects
On-going since 2015: The A-T Children’s Project launches the Global A-T Family Data Platform and Genome Sequencing Project. A patient driven effort lead by Anthony Philippakis, MD, PhD at the Broad Institute at Harvard and MIT, this platform is compiling clinical and genomic information in order to be shared and be accessed by scientists and researchers worldwide.
- 2017 update: Over 190 people with A-T have registered on the platform with 110 children with A-T contributing saliva samples for DNA sequencing. The platform is now available in 6 languages and is approved in 6 countries. Data is being established and will be available for researchers by October 2017.
2014-2016. Metabolic Sensing and Stress Response Deficit in Ataxia Telangiectasia. Primary researcher: Dr. Michael Kastan of Duke Cancer Institute. Co-funded with the A-T Children’s Project
- 2017 update: Dr. Kastan’s research is continuing to make advancements through a grant from the Orphan Disease Center at University of Pennsylvania School of Medicine.
- 2015 update: Due to study results so far confirming their theory, Dr. Kastan and his team will continue their research to explore possible drug targets towards a clinical trail.
2013. Mitochondrial Reactive Oxygen Species and Dysfunction in Ataxia-Telangiectasia. Primary researcher: Dr. Gerald Shadel, PhD. Yale University.
- 2014 update: Dr Shadel and staff’s result are positive, confirming their theory. At the end of yr 1 (2013), CT Innovations (Venture Capital firm) awarded Dr. Shadel a 2 yr grant to pursue the analysis of Mitochondrial defects in induced pluripotent stem cells from A-T patients.
2011-2013. Linking Neuro-degeneration to Protein Turnover in Ataxia Telangiectasia. Primary researcher: Dr. Shyamal Desai, PhD. Louisiana State University. Co-funded with the A-T Children’s Project August 2011
2011-2013. PCD mice as an Animal Model of Ataxia in A-T Primary researcher: Dr. Kamran Khokakhah, PhD. Albert Einstein University. Co-funded with the A-T Children’s Project August 2011
2010-2013. Systematic Inflammation in Patients with Ataxia Telangiectasia. Primary researcher: Dr. Sharron McGrath-Marrow, Johns Hopkins Hospital. Co-Funded with A-T Children’s Project.