WHAT'S GOING ON IN OUR WORLD?
ONGOING SUPPORT INITIATIVES
In the United States, AGSAA is closely partnered with our scientific advisor Dr. Adeline Vanderver, an international leader in the study of white matter/myelin diseases, and the Leukodystrophy Center of Excellence at the Children's Hospital of Philadelphia (CHOP). We are continuing to nurture and develop relationships and partnerships with relevant researchers, clinicians, and organizations around the world.
We are currently focusing our fundraising efforts to support the following projects:
Expansion of a promising compassionate care clinical research trial (JAGA) led by Dr. Vanderver
Development of a newborn screening platform to identify early and subsequently treat AGS in infants before devastating damage occurs as families desperately seek and await a diagnoses
Planning a family/scientific conference in 2018
Financially supporting initiatives like the Calliope Joy Foundation's TJ's Travel Grants to help more families facing a leukodystrophy diagnosis travel for highly specialized care and treatment options
February is World Rare Disease Month and September is Leukodystrophy Awareness Month. Many members of our “AGS family” spent these months, along with other key opportunities or personal milestones like their child's birthday or an event in their community, to raise awareness and collect funds for AGS research.
A sampling of family-driven events in recent years include:
- Jackson’s Honest chip company donated February's online orders sales, totaling $5,000+
In Corpus Christi, a family held a Chipotle Night fundraiser resulting in $1,500+
Grace Lutheran in La Plata, MD raised almost $5,000.
An online Mother's Day call to action raised almost $2,500
Families of children and adults with AGS have the odds stacked against them and the responsibility is on us to find a cure for our loved ones. Given its rare status, there is no centralized funding for research and every dollar helps us get closer to preventing negative outcomes for AGS patients and their parents.
We need YOU to help make this happen! Any of our board members are always willing to discuss and help facilitate ideas and partnerships that will result in raising awareness and/or funds for AGS research.