2023 Tax Return Organic Acidemia Association

OAA FINANCIAL SUMMARY 2023

Each year we report the financial status of the OAA, highlighting our accomplishments and the source/use of funds received.

In 2023, we received nearly $97,000 in grants, donations and investment income. We sincerely thank the following donors who contributed over $10,000 to the OAA:  Moderna, Selecta Biosciences, Hemoshear Therapeutics, CoA Therapeutics, Donovan Controls and The Gary S. Stevens Donor Advised Fund.

We made grants to the National Institute of Health and Oxford University in the name of the OAA. Our outreach included the OAA Newsletter, Facebook and other social media presence, speaking at Rare Disease Day at CoA Therapeutics in San Francisco and the University of Minnesota, and participation at the SIMD Conference in Salt Lake City and the Abbott Conference in San Antonio. We hosted webinars on ABLE accounts, and live zoom seminars with dieticians. And we executed a social media campaign designed by students at the University of Minnesota.

As you can see, it was another successful year of delivering visibility for our OAA families and contributing to the long-term prospect of realizing cures for our OA disorders.

Thanks to everyone who contributed, participated and/or organized fundraisers for OAA in 2023 – below is a few of the fundraisers – please let me know if you are interested in creating a fundraiser for OAA.

• Rare Disease Day Tshirt fundraiser – raised $1341.52
• Jaehnke Family Tshirt Fundraiser – raised $212.62
• Facebook Fundraisers – raised $1305.56
• OAA Calendar fundraiser – raised $547.59
• Amazon Smiles program (now discontinued) $784.31
• Norwex Fundraiser raised $40.00
• Medtronic Foundation Donation – $900.00

During 2022, the OAA collected a total of $109,117 in contributions and earnings on our investments. Not shown in this amount are contributions previously made in support of our 2020 family conference which was postponed due to the Covid pandemic.
For 2022, we published two issues of our newsletter, read by thousands around the world. This vital communication tool distributes information to parents and health professionals on updates, editorials, and letters from and for affected families. We also actively participated in facilitating communication through our public/public Facebook group as well as other social media platforms such as Twitter, Instagram, and LinkedIn.

In June we held our previously delayed bi-annual family conference in Bethesda Maryland. The well-attended meeting included participants from HCU Network America and the Propionic Acidemia Foundation.

We continue to give visibility to organic acid disorders through our presence at key conferences. In 2022, we participated in Moderna’s “Voice of the Patient” and then at the CHARLIE consortium conference in Barcelona, Spain.

During the year we hosted a number of webinars including: a session for ORCAM, a device for the visually impaired (something very important to our MMA members who often struggle with their sight), and a program advancing interest in research for MMA and PA.

We continue to make investments in maintaining our global presence with our first major update of the OAA internet web site in 10 years! We also executed a social media campaign created with collaboration from students at the University of Minnesota.

We proudly awarded research grant to National Research Council’s Institute of Biophysics in Palermo, Italy who are working to identify potential treatment for cobalamin C (cblC) deficiency. We also awarded a research grant to the Healthwell Foundation to assist family’s copayments. And finally, we again participated with Rare Science Inc. to distribute their very popular “Rare Bears” to our OAA kids.

As shown in the chart below, we ended 2022 with a balance of $688,418 in our investment accounts.

FY2022
REVENUE
Donations/Investment Income $109,117

EXPENSES
Grants $14,500
Management $48,863
Conferences, Meetings & Travel $44,464
Family Support & Programs $5,565
Website Refresh $8,877
Office Expenses, Accounting, Insurance $6,297
Newsletter $7,618
Telephone/Internet $3,463
$139,647

FUND CHANGE (Revenue-Expenses) -$30,530

ENDING FUND BALANCE $688,418

2021 OAA Tax Return

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 OAA Tax Return

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 Tax Return

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.

2017 OAA Tax Return

2017 OAA Financial Statement