Your tax deductible contribution helps us to further the mission of the Organic Acidemia Association!
Your tax deductible contribution helps us to further the mission of the Organic Acidemia Association! Give with Confidence! Check out OAA’s Profile on GuideStar.org
2021 Year In Review:
With the support of these and many other contributors to OAA, we were able to accomplish the following during 2021:
- Published a newsletter three times during the year to provide information to parents and health professionals on updates, editorials, and letters from and for affected families.
- Managed private/public Facebook groups with other social media presence on Twitter, Instagram and LinkedIn.
- Hosted Webinar for Hemoshear Therapeutics – New Horizons for MMA & PA – April 17, 2021
- Hosted Webinar – New therapies for Combined D/L2HGA & Isovaleric Acidemia – August 9. 2021 – Virtually presented an award for Dr. Vockley for his over 20 years of service as OAA’s medical advisor.
- Hosted Webinar – Understanding the Clinical Trial Process – with Dr. Jerry Vockley and Dr. Greg Enns – September 8, 2021
- Continue planning for upcoming HCU/OAA/PAF conference – planned in June 2022.
- Began major upgrade to the OAA website – plans to roll out summer of 2022.
- Assessment the OAA Natural History Registry to determine upgrade potential
- Executed social media campaigns created by University of Minnesota students in collaboration with OAA.
- Collaborated with Rare Science, Inc. to send Rare Bears to OAA children
- Continued Zoom Friendship Meet-Up for young adults with an OA disorder
2020 OAA Tax Return
2020 Year In Review:
(2020 was a challenging year for all of us!)
- OAA hosted table at the Rare Disease Day Event at the University of Minnesota – February 2020
- Mailed over 275 KN95 safety masks in early 2020 to OAA families
- Collaborated with other support groups to distribute survey on COVID-19 experiences affecting daily lives
- Planning for Family Conferences, but eventually postponed until June 2021
- Started a weekly Zoom Friendship Meet up for young adults with an OA disorder
- Published and mailed three newsletters in 2020
- Awarded a $20,000 Grant to the NIH
- Awarded a $500 Grant to the Emory University to their Nutrition Research Program
- OAA participated in Everylife Foundation – Rare on the Road virtual program – June 2020
- OAA spoke at MetabolicUK Virtual Conference – October 2020
- OAA attened the virtual NORD Rare Disease Summit – October 2020
- Hosted a Town Hall with our medical team at the NIH in December 2020
- Help recruit MMA and PA families in Hemoshear Insight Study
- Collaborated with Rare Science, Inc. to send Rare Bears to OAA children
2019 Year In Review:
Since you were so generous, we have been able to make tremendous progress. Here are some of the highlights of the past year:
- Hosted a table at a Rare Disease Day Event at the University of Minnesota in February 2019
- Hosted a table at the SIMD Professional conference in Seattle, WA in April 2019
- Hosted a table at the Abbott Nutrition Metabolic Conference in Atlanta, GA in June 2019
- Hosted a table at the SIMD/NAMA (North American Metabolic Academy) training in the Twin Cities in September 2019
- Hosted at table at the Rare New England Conference in Portland, MA in October 2019
- Published and mailed three newsletters in 2019
- Traveled to Boston, MA to visit with pharmaceutical company, LogicBio and share information about OAA
- Attended the NORD IAMRARE Registry Leaders Community Meeting in Washington DC in October
- Awarded a $10,000 Grant to the NIH
- Awarded a $1,000 Grant to the Emory University to their Nutrition Research Program
- Awarded a $5,000 Grant to Aza Technology to assist in the production of a Portable Ammonia Device
- Collaborated with Rare Science, Inc. to send Rare Bears to 50 OAA children.
2018 OAA Financial Statement
2018 Year In Review:
Your generosity has allowed us to make 2018 a success! Here are some of the highlights of the past year:
- Attended/Exhibited at two professional conferences, SIMD and GMDI (Society for Inherited Metabolic Disorders and Genetic Metabolic Dietitians International)
- Conducted a webinar on Insurance Reimbursement Guidance
- Host our bi-annual Family Conference along with the FOD Family Support Group – with over 300 in attendance in the Twin Cities.
- Attended NORD’s Patient Registry Meeting.
- Over 100 participants in the OAA Natural History Registry!
- Collaborated with Moderna on Patient Reported Outcome Survey for new treatments for MMA/PA
- Sent $10K to the NIH in support of Dr. Chuck Venditti’s study
- Sent $500 to Emory University in support of the Nutrition Program Research Fund
- Created a GA1 Research Fund with NORD
- Created fundraiser for Portable Ammonia Device
- Collaborated with Rare Science, Inc. to send Rare Bears to 82 OAA children.