The UMDF Stanley A. Davis Leadership Award, Heartstrings and LEAP Awards
2009 UMDF Stanley A. Davis Leadership Award
The United Mitochondrial Disease Foundation has announced that Lisa Arnold of Aurora, OH is the UMDF’s 2009 recipient of the “Stanley A. Davis Leadership Award.” The award is the UMDF’s most prestigious national award honoring a UMDF Leader that best represents the selfless dedication and commitment to the UMDF Mission as that of its namesake. Arnold is the Vice President of the UMDF Ohio Chapter and has been involved with the UMDF for over nine years. Arnold has been a driving force in the progress of the chapter and, most specifically, the “Run Wild for a Cure Run/Walk”. Team Bobby, named after her son, is consistently one of the top fundraising teams in the “Run Wild” event. Arnold is also active in reaching out to allied health professionals with UMDF literature and information, and to school children with awareness materials. She is always willing to talk to other families about mitochondrial disease. “Lisa Arnold truly embodies the spirit of leadership in the UMDF and it is our pleasure to present to her the Stanley A. Davis Leadership Award.” said Chuck Mohan, CEO/Executive Director of the UMDF. The Award is named after Stan Davis, who passed away in 2008. Davis served foundation as treasurer, vice chairman and in 2007, he was elected Chairman. During his tenure, UMDF saw its chapters and groups increase to 60 nationwide and membership increase by 25%.
2009 LEAP Award
The United Mitochondrial Disease Foundation also recognized Perri Elaine Miologos, 22 of Lombard, IL. with the “2009 LEAP Award.” LEAP, which stands for Living, Encouraging, Achieving and Persisting, was designed to recognize and individual, 14 years or older, living positively with a mitochondrial disease. The award is given to highlight the recipient’s accomplishments and volunteer service. During her freshman year at the prestigious Boston University, Miologos learned that she had Kearns-Sayre Syndrome, a rare mitochondrial disease. Numerous medical tests and trips to specialists in Tokyo, London, and New York have been a part of her routine ever since. While others might have given in to such a devastating diagnosis, Miologos, with her indomitable and joyful spirit, never allowed it to conquer her dreams. She excelled academically at Boston College and graduated with a BS degree in Public Relations and a minor in Art History. She has set high goals for herself without dwelling on the potential impact of her disease. Her future plans include obtaining a Master’s Degree, possibly an MBA. Meanwhile, she thrives in her market research position at Conagra, while working for her mother’s real estate agency on the side. “It is obvious to those who know and love Perri that she embodies the spirit of the LEAP award. She has not let this devastating syndrome impact her future at all. She has an amazing spirit and she is a true fighter,” said Mohan in making the presentation.
2009 Heartstrings Award
The UMDF has named Emily Lyons, 14, from Dacula, GA., the 2009 winner of the “Heartstrings Award.” The was created to recognize the efforts of an individual under the age of 18 who has donated or raised funds for the UMDF, enabling the UMDF to continue its mission. The winner is chosen based on the criteria of age, time invested, talents demonstrated, effectiveness and generosity. Lyons, lost her younger brother, Jake, to Leigh’s Disease in 2007. Although she does not have a mitochondrial disease herself, she has a passion for raising funds and awareness for mitochondrial disease and the UMDF because of Jake. “Emily has been a star volunteer for the UMDF Atlanta Chapter. You don’t have to ask Emily to volunteer; she will always lend a hand. Emily has volunteered at many fundraising events,” said Mary Swinn, secretary of the Atlanta Chapter. “Her volunteer efforts have ranged from manning booths/activities, filling and handing out goody bags, handing out toys at the holiday party, helping with childcare at meetings, and handing out water to runners. Additionally, she was part of a Coins for a Cure Campaign set up in her middle school.” Emily has done much to educate her school classmates and friends about mitochondrial disease. She has written papers for class assignments and won both a school and county award in 8th grade for her “Reflections” paper about her little brother. Because of Emily’s influence, her classmates have become so well-versed about mitochondria and related diseases that, as a group, they immediately corrected an uninformed teacher who had never heard of defective mitochondria!
2008 UMDF Heartstrings and Stanley A. Davis Leadership Award
The United Mitochondrial Disease Foundation awarded an Atlanta area father and daughter two of the organization’s three national volunteer awards. Chris Swinn, of Stone Mountain, Ga., is the first ever recipient of the “Stanley A. Davis Leadership Award”. The award is considered the most prestigious UMDF national award. It was created this year to honor a chapter president who best represents a selfless dedication and commitment to the UMDF mission and that of its namesake, Stanley Davis. The awards were presented at the UMDF’s annual Symposium, June 27, 2008 in Indianapolis, Indiana. Davis died earlier this year after dedicating himself to the success of the UMDF. Swinn serves as the Chapter Liaison to the UMDF Board of Trustees. Swinn, a native of Southampton, England, is the owner and general manager of the Peachtree Club in Atlanta, Ga. He and his wife, Mary, have two daughters, Emily, 12 and Rachel, who is 10. Swinn was surprised when he was presented the leadership award by his daughter, Emily. She announced her father was the winner after she received the UMDF’s 2008 “Heartstrings Award.”The Heartstrings Award is given to an individual under the age of 18 who has invested their time, demonstrated their talents, effectiveness and generosity in raising money or donations to enable the UMDF to continue its mission. Emily was diagnosed with a mitochondrial disease when she was five. Working with the Atlanta Chapter, Emily has volunteered, participated, and served as a spokesperson for numerous events in Atlanta. Emily also helps keep the Atlanta Chapter moving by assisting with mailings and meeting set up
2008 LEAP Award
The UMDF 2008 LEAP AWARD recipient is Therese Garvin. LEAP, which stands for Living, Encouraging, Achieving and Persisting, was designed to recognize and individual, 14 years or older, living positively with a mitochondrial disease. The award highlights the recipient’s accomplishments and volunteer service. Garvin is the Delaware Valley Chapter President. Despite her illness, she continues to be an inspiration in all she does for the Delaware Valley Chapter and the UMDF.
2007 UMDF Heartstrings Award
This award was created to recognize a child or teen who has donated or raised funds for the UMDF, enabling the UMDF to continue its mission. The winner is chosen based on related criteria of age, time invested, talents demonstrated, effectiveness and generosity.
This year we have two honorees -- sisters Ashley and Brittany Wilkinson. Brittany, the UMDF’s first Youth Ambassador is a courageous young lady who doesn’t let the weeks or months she spends in the hospital keep her from working on her fundraising events, making calls, dictating letters and talking to everyone who comes into her room about what she is doing and why. After raising more than $16,000 in one year, Brittany is working hard to go nationwide this year!
Her older sister Ashley is also living with mitochondrial disease, but she doesn’t let that stop her from walking door-to-door to pass out flyers for her sister’s events. She even sings at the dinners, performs with her sister and gives speeches to classrooms, despite trips to the hospital three times a week for four-hour infusions. Both girls are an inspiration!
This year’s recipient is Jamieson Smith, a sophomore at Shawnee High School in Medford, New Jersey. Jamie was diagnosed with a mitochondrial disease in 1999 and has had many health struggles since his diagnosis, but each time he overcomes them with a positive attitude and a unique energy for life.
Despite being hospitalized every 21 days for IVIG, Jamie is living life to the fullest. He is involved in the UMDF not only as a Youth Ambassador, but also as a member of the Delaware Valley Chapter board. He recently testified in support of the New Jersey Mitochondrial Disease Awareness Week legislation. Jamie is also active in several school and church activities, is an honor student and was February 2007 Student of the Month.
Above all, Jamie cares deeply about finding a cure for mitochondrial disease, not only for himself but for his friends who are also affected.
Jamieson is Living with the disease, Encouraging others to help the UMDF, Achieving by building awareness, and Persisting every day to help others.
2006 UMDF Heartstrings Award
The UMDF 2006 Heartstrings Winner, Hannah Roberts of Cleveland, Ohio, is 14 years old and has a mitochondrial disease.
Over the past year and half, Hannah has been working on a Jewish Holiday Cookbook. The project began in Speech Therapy – she and her therapist were looking for new ways to work with Hannah on her language skills.
Since Hannah enjoys baking and is active in her religion, they decided to try decorating cakes for the different Jewish Holidays. Hannah came up with ideas on how to decorate cakes for different holidays and then wrote down directions so another person could create the cake on their own. The idea grew into a cookbook – Hannah sold the book to raise awareness about mitochondrial disease and dollars for UMDF.
Her project took over a year to put together from start to finish. Hannah sold all of her copies (100) within a week and a half – raising $1,000 for UMDF. Her parents said on their nomination form, “What tugged at us most about this project – it was never about Hannah. When she came up with the idea, it was ‘to help others like me.”
2006 UMDF LEAP Award
Pam accepted the responsibility of Kansas City Chapter President in 2005 -- even though her disease symptoms cause her to tire often. She willingly organized and reorganized the chapter to bring back key members to the board and works hard to motivate and support the KC Chapter Board as well as strives to meet the needs of the families that call her.
Pam is a pediatrician but can no longer practice because of her mitochondrial disease. Instead of being discouraged by what she can no longer do, Pam channels her energy and knowledge to help parents and other adults. Her commitment to share information and inform the public about mitochondrial disease is never ending and she always gives 150% -- even when she should be resting!
Pam is Living with the disease, Encouraging others to help the UMDF and each other, Achieving by building the capacity of the Kansas City Chapter, and Persisting every day to help others.