2020 Annual Gratitude Report
On behalf of the Board of Directors, our Founder and Executive Director, this gratitude
report is a reflection of the generosity of our donors, granters and sponsors.
A complete Annual Gratitude Report will be published by April 1, 2021.
Despite COVID and canceled and reimagined fundraisers, we were able to assist seven (7) patient families and made substantial donations to GI Patient Funds at four (4) major children's hospitals. We could not have done it without the support of the communities we serve and we cannot thank you enough.
The COVID-19 pandemic has reshaped our fundraising efforts and
the urgency in which we needed to disburse funding to rare pediatric GI patient families
who lost income, insurance and hope. Without the incredible participation during our
Zebra 5K, the Facebook Birthday Fundraisers, Memorial Contributions in honor of our
friend, Steven Parker, Organnon’s Round Up Program, and a generous Global Genes
2020 Continuity of Care RARE Patient Impact Grant we would not have been able to
disburse funds during the urgent need of the COVID-19 crisis.
Thank you to all who
have made contributions, volunteered, sponsored and participated. Without you, we
could not help the families facing the challenges of “living rare.” We will update our
information to reflect the full year in December 2020.
As of July 1, 2020, three months into the COVID-19 pandemic, Avery’s Hope disbursed
funds to St. Jude Children’s Research Hospital’s Department Clinical Nutrition
Department and The HOPE Fund for Families for the Department of Gastroenterology,
Hepatology and Nutrition. We anticipate disbursing funds to the Acacia Puleo Small
Bowel/Liver Transplant Patient Assistance Fund at Children’s Hospital of Pittsburgh and
the GI Department Patient Assistance Fund at Texas Children’s Hospital.
Disbursement of Funds
In September, our signature event, #CaringForRare Bicycling Event Weekend, has
been changed to a virtual event to keep our participants, volunteers, sponsors and
hosts safe. Our yearly golf outing had to be canceled. We will be participating in
#GivingTuesday in December. Fundraising has been difficult, but like rare disease
which does not stop, neither will we.