Living, Encouraging, Achieving & Persisting
Purpose: To recongnize an individual living positively with mitochondrial disease, highlighting the person's accomplishments and volunteer service.
Eligibility: Age 14 years or older.
Criteria: Individual with confirmed or suspected mitochondrial disease who overcomes daily challenges to achieve goals in career, family, and volunteer serivce. The individual demonstrates a positive attitude, hope for a brighter future, and an enthusiasm that inspires others.
The 2016 LEAP Award winner is Bethany Stamper
of Creston, Ohio.
Bethany is 27 years old and was diagnosed with a mitochondrial disease in 2015,
something she learned as she was helping as a co-chair for the Energy for Life
Walk in Akron, OH. Before her diagnosis, her
son, Kaidon, passed away at 9
years in April of 2013. He was 14 months old when doctors thought he had
leukemia, but it turned out he had a rare immune issue. It wasn’t until October
of 2010 that Bethany heard the news, Kaidon had a mitochondrial disease.
Kaidon passed, Bethany started a research fund in Kaidon’s name and vowed to
spread awareness are raise funds for mitochondrial disease. In 2015, Bethany
started experiencing symptoms of mito. After a month long stay at Cleveland
Clinic, the doctors believed that she was suffering with a mitochondrial
disease. This didn’t stop Bethany from keeping a smile on that beautiful face.
Not wanting to give up on her dream of funding research in Kaidon’s name,
Bethany persistently continued to fight and raise awareness. In September,
2015, Bethany and her family reached their goal of $10,000 raised for research.
She was so excited!
During her journey, she had met another mito mom from Ohio, Allisa Whitt.
Allisa’s daughter Leslie had passed from a mitochondrial disease in October
2012. Allisa and her family started the Leslie Whitt-Williams research fund in
2013 and also made the same promise as Bethany, to raise $10,000 for research.
They were going to fall short of their goal, when Bethany received a donation
that she knew would help Leslie’s fund. So, Bethany contacted the UMDF and made
that donation and surprised the Whitt’s with the news.
Because of Bethany’s selfless gift, both Bethany and Allisa have begun another
journey – this time cross country! They loaded up in an RV, and headed to
Seattle. She is truly Living, Encouraging, Achieving and Persisting in her
fight with mito!
The 2013 LEAP award went to Cynthia Steward of Chicago, IL. Cyndy is a mother, wife, grandmother, and sister, working a full-time job and studying to earn a Master’s Degree in Accounting, despite fighting through the mitochondrial disease that has ravaged both her and her family. Cyndy’s granddaughter, Bailey, passed from mitochondrial disease in 2011 and Cyndy began an annual fundraiser in honor of Bailey the following year.
Cyndy’s daughter, Dawn, is also affected by LHON and Leigh’s-like syndrome. Dawn suffers a visual impairment, so Cyndy read Dawn’s college text books to her, eventually inspiring Cyndy to return to school and work for her degree. They have since received their Bachelors in Business Administration in Accounting from Devry University, and are currently in the Masters Program at Keller Graduate School of Management of Devry University. Both maintain a 4.0 grade point average.
Cyndy is active in helping with the Energy for Life Walk in Chicago, joining the Walk committee for the 2012 and 3012 Walks. She was pleasantly surprised at the generosity of people as she asked for donations and sponsors. She is also very active at Chicago Chapter Support Meetings, sharing coping skills, and information on treatments and supplements.
She has also found comfort in being involved in a local church and is now a preschool teacher for the Sunday School program. A warm and loving person, her heart is open to help others and encourages all those around her to keep moving forward. Thank you, Cyndy!
The 2012 LEAP award went to Rachael Pipp of Port Washington, WI. According to Rachel Mazur, UMDF Special Events Associate, “Rachael has been a driving force in spreading awareness while also fundraising for a cure.” Rachael’s dedication to finding a cure is amazing. She created Marathon for Mito, a fundraiser in which she collects pledges and rides her stationary bike. She also started, Passion for Fashion, a business which allows her to use her creativity to design duct tape items, such as purses and pens. She donates a percentage of the proceeds to the United Mitochondrial Disease Foundation (UMDF). In addition, Rachael and her mom, Mary, opened Art Oasis, a studio in Cedarburg where others with disabilities can go to make crafts and raise money for their favorite charity. Rachael has also participated in the UMDF’s Energy for Life Walkathons in Chicago and Pittsburgh, and she is currently seeking donations for the Energy for Life Walkathon in Milwaukee, WI. She has even walked in 30-degree weather to collect pledges. In the past year, she has raised about $3,000 for the UMDF.
Rachael’s vibrant spirit inspires all those around her. She does not allow mitochondrial disease to dampen her joy of life. While suffering with the effects of the disease, Rachael is constantly giving her time and talents to her fundraising efforts and to others. The UMDF presented the LEAP award at the symposium to Rachael, who is Living, Encouraging, Achieving, and Persisting in every aspect of her life!