25th Anniversary
For over 25 years we have counted on you, our most dedicated donors. You have funded critical educational programs and support services for patient families. You have powered the research that brings us closer to a cure.
In this, our 25th Anniversary year, you have a special opportunity to make a gift that moves us closer to a cure.
Hope in Progress
1996 – UMDF Founded
The United Mitochondrial Disease Foundation (UMDF) was formed in 1996 by bringing together several of the early mitochondrial foundations and interest groups. Some of these included the COX (Cytochrome c Oxidase) Foundation, founded by Charles (Chuck) Mohan, the PALS (People Affected by Leigh Syndrome) Foundation, founded by Mark Fleming, and the National Leigh’s Disease Foundation (NLDF), founded by Charles Wilbanks.
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.
2008 – NAMDC Funded
The North American Mitochondrial Disease Consortium (NAMDC) was funded to establish a network of clinicians and clinical investigators who follow sizeable numbers of patients with mitochondrial diseases and who are involved or interested in mitochondrial research.
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.
2009 – DoD Funded
For the first time, mitochondrial disease and dysfunction was added to the Defense Department Appropriations Bill. This initial inclusion, approved by the House and Senate, cleared the way for federal funding for mitochondrial disease research within the Department of Defense.
2010
The first UMDF Workshop at the NIH was coordinated by former U.S. Senator Barbara Boxer. Senator Boxer, UMDF and Members of the Scientific and Medical Advisory Boardgathered with the heads of the National Institutes of Health to discuss and coordinate mitochondrial disease/dysfunction occurring each institute.
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.
2018 – MCN Established
The Mitochondrial Care Network (MCN) was established to optimize patient care.
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.
2021 – UMDF Turns 25!
UMDF kicks off their 25th Anniversary celebration.
Inspiring Our Mission
Send Us Your Photo!
Throughout the year, UMDF will feature special moments from the past 25 years. We invite you to be part of this celebration. Share your memories, pictures and videos and show us how the UMDF has made an impact on your life.
