Community Impact

There are many ways to leave a lasting legacy.

UMDF Founder Chuck Mohan and his wife, Adrienne, had been thinking about a number of options to leave a legacy in honor of their daughter, Gina.

Gina Mohan was only 10 years old when she developed the symptoms of MELAS, mitochondrial encephalomyopathy, lactic acidosis, and stroke-like episodes. She would lose her battle with her mitochondrial disease in 1995 at the age of 15. Chuck and Adrienne refused to become victims of mitochondrial disease and created the United Mitochondrial Disease Foundation in the basement of their home in 1996. Chuck would go on to make UMDF the leader in support, education, advocacy, and research before his retirement as CEO and executive director in 2018.

After thinking about a number of options to honor Gina’s life, the Mohans chose to make a high impact gift through life insurance. Working with their financial advisor, Chuck and Adrienne purchased a life insurance policy that names UMDF as the beneficiary.

“Chuck and Adrienne’s gift is just one example of the many ways donors can make a substantial gift that leaves a lasting legacy”, said Beth Whitehouse, UMDF Director of Development.

Donors who opt to create a life insurance gift qualify for a federal income tax charitable deduction on their taxes. If you continue to pay premiums on the policy, each payment is tax deductible as a charitable gift when you itemize.

“The gift of a life insurance policy can become a powerful and simple way to leave a legacy that supports the continuation of the good work done by the UMDF,” Whitehouse said.

Rosalind and Stephen Atkins remember their sons with pride.

Creative writing, history, humanities, and literature were Michael Atkins’ passions. Michael wanted to become an English teacher but, because of his mitochondrial disease, he was unable to proceed beyond student teaching. Michael earned the Joslin Prize at Brown University for his advocacy for people with disabilities, an award given to a select group of seniors whose contributions to the quality of student life are exemplary.

His brother, Joshua, loved science. He graduated college with academic honors in biology and nearly completed a PhD program in neuroscience. His goal was to work on the science of the mitochondria.  Joshua earned the Bensinger Prize at Davenport College, Yale.

Both young men were diagnosed in 1999 with Ataxia Neuropathy Spectrum Disorder/SANDO. Michael lost his battle with mitochondrial disease in 2011. Joshua passed away from the illness in 2017.

“Both of our sons received help all along their journeys: from family and friends, from the medical community, from their schools and colleges, and from the UMDF, which works to combat this devastating illness in so many ways,” Rosalind said.

Their parents first learned of UMDF from a physician, who stated clearly that they needed more than local support and could find it through UMDF. The family attended several Mitochondrial Medicine conferences.

“UMDF’s generous support of the needs of patient families is outstanding,” Rosalind said. She was impressed with the interaction between patients and the education about the illness by mitochondrial medical experts at each annual session.

In honor of their two sons, and to help the UMDF fund its areas of greatest need, the Atkins have generously dedicated a planned gift in Michael and Joshua’s memory. By naming UMDF as a beneficiary of their estate, the Atkins have established a legacy in making a difference for the patient families the UMDF serves.