1996 – Scientific Advisory Board Formed
The Scientific Advisory Board (SAB) was formed (currently known as the Scientific and Medical Advisory Board (SMAB)). This board uses their education, experience and expertise to guide UMDF on medical and scientific issues impacting our community.
1997 – UMDF Awards First Research Grant
Dr. Richard Boles received UMDF’s first research grant of $30,000. One of UMDF’s early research grant prize recipients was Dr. Carolyn Bay from Children’s Hospital of Pittsburgh. She was awarded $5,000 to support her research surrounding mitochondrial etiologies of pseudo obstruction and dysmotility in children.
1997 – First Capitol Hill Visit
UMDF made its first visit to Capitol Hill. UMDF counts on the support of its patient advocates to share their voices on issues impacting our community.
1997 – First UMDF Employee
Kara Strittmatter was hired as UMDF’s first employee. Its first office was located in Chuck Mohan’s basement in Pittsburgh, Pennsylvania.
1998 – First UMDF Chapter
UMDF forms its first chapter in the Delaware Valley.
1999 – First UMDF Chairman
Chuck Mohan named first chair of the Board of Trustees. In 2007, Chuck became UMDF’s CEO, until his retirement in 2018.
2000 – First UMDF Symposium
The first UMDF Mitochondrial Medicine Symposium was held in Cleveland, Ohio, and brought together patient families and the world’s experts in mitochondrial disease.
2006 – Ambassador Program Launches
UMDF launched the Ambassador program to connect patient families with trained volunteers to help navigate their journey.
2009 – First Day on the Hill
UMDF brought more than 150 patient families to Capitol Hill for its first Day on the Hill advocacy event to speak to their senators and congressmen about mitochondrial disease.
2010 – Energy for Life Kicks Off
The first Energy for Life Walkathons were held in the fall of 2010 in Minnesota, Western New York, Kansas City, Delaware Valley, Chicago, and Charlotte. The first year brought together 159 teams, 1733 walkers and raised $311,000.
2012 – Energy for Life Milestone
Energy for Life Walkathons hit $1,000,000 fundraised.
2012 – First UMDF Congressional Caucus
The first Mitochondrial Disease Congressional Caucus was formed. Mito warrior Liz Kennerly was the featured speaker.
2013 – Science & Alliance Officer Hired
Dr. Phil Yeske became UMDF’s first Science and Alliance Officer. In his role, Dr. Yeske brings together the patient, scientific and clinical communities in collaboration with industry partners to advance the development of treatments and cures for mitochondrial disease.
2013 – UMDF Creates Vanguard Award
Dr. Salvatore DiMauro was named the first UMDF Vanguard Award Winner. This award honors members of the scientific and medical community who have devoted their career to the field of mitochondrial medicine or research.
2018 – UMDF Hires New CEO
Upon the retirement of UMDF Founder, Chuck Mohan, Brian Harman was hired as President & CEO, bringing with him his foundation expertise in marketing, advocacy and fundraising.
2019 – FDA Meeting for Patient Families
UMDF was invited by the FDA to host an Externally-Led Patient-Focused Drug Development Meeting (PFDD).
2019 – Leigh Syndrome Consortium
UMDF and its international partners officially launched the Leigh Syndrome Roadmap project.
2020 – UMDF Symposium Goes Virtual
In the wake of the coronavirus pandemic, UMDF hosts its first virtual symposium: PowerSurge 2020.