At its 20th Anniversary Banquet at Mitochondrial Medicine 2016, the United Mitochondrial Disease Foundation (UMDF) honored several of its volunteers for their role in helping the entire mitochondrial disease community move closer to treatments and cures. The awards were presented by UMDF Executive Director and CEO Charles A. Mohan, Jr., and Patrick Kelley, UMDF’s Chairman of the Board of Trustees.
The Energy Award recognizes an individual who embodies the spirit of the UMDF and its mission: Promoting research and education for the diagnosis, treatment and cure of mitochondrial disorders and providing support to those affected. The 2016 Energy Award Winner is Karen Loftus of Milwaukee, WI.
Karen has been an active leader and impactful volunteer for 9 years, since her diagnosis. She has volunteered at the Chicago EFL for 6 years. Karen co-chaired the inaugural EFL in Milwaukee and continued in that role for 3 years. Karen has served as a UMDF ambassador for 5 years. She initiated support group meetings in Milwaukee and has been successful holding bi-monthly meetings for 2.5 years. Karen has always been involved in local advocacy and awareness activities, speaking at event at the WI capital on behalf of the UMDF. Karen has co-chaired a local third party fundraiser, the Greater Mito Open, for 2 years. Karen’s family EFL walk teams have raised over $17,000 in Milwaukee and over $7,500 in Chicago.
In the past 18 months, Karen has initiated one of the most unique awareness and fundraising projects in her Appalachian Trail Virtual Mileage Hike. Karen set out to hike the distance of the AT in her daily walks/goals in Milwaukee. Karen started an Activate page and Facebook page to gain awareness and potential fundraising. As of the middle of April, Karen has walked 3,160 miles!!! She has posted about her journey and goals along the way, and has gained followers in all 50 states, over 33 countries and all 5 provinces in Canada. In the beginning of May, Karen will be traveling to a portion of the AT to hike for “real”, bringing full-circle her virtual project. She will be leaving “trail angel” packets for others that will provide UMDF information, point to her Facebook page and our web page. Karen has always dedicated 100% of herself to the UMDF in all areas. She is one of our strongest advocates and most dedicated & selfless volunteers.
The Heartstrings Award is presented to an individual(s) under the age of 18 who have invested their time, demonstrated their talents, effectiveness and generosity in raising money or donations to enable the UMDF to continue its mission. The 2016 Heartstrings Award was presented to Andrew Anderson, Fort Myers, Florida and
Makenzie Lawrey of Cape Coral, Florida.
They are two kids on a mission – a Million Dollar Mission! Their goal is to raise a MILLION dollars for the UMDF! They have participated in countless fundraisers and actually helped start the Energy for Life Walkathon in Southwest Florida! They are an inspiration to all that meet them. Eleven-year-old Makenzie Lawrey is a big sister on a mission to save her little brother, Gavin and others that suffer from Mitochondrial Disease. She’s a little girl with big dreams. She wants the whole world to know what Mito is and believes that one day doctors will find a cure. She wants people to know the kinds of incredible superheroes kids with Mito Disease are. She takes the platform on her brother’s behalf as often as she can and her ultimate goal is to raise $1 million for Mito research.
Andrew (Drew) is a 12 old boy who has lost two siblings to Mito. He lost his sister Rylee 6 years ago, and his brother Xavier 22 months ago. Shortly after Rylee passed away Drew’s family was introduced to a local family whose son was going through testing for Mito. This family had a daughter that was Drew’s age. They became fast friends and a huge support for each other. Drew, in typical boy fashion, picks on Makenzie to no end, but the love for each, the understanding of each other, the support given to each other is a friendship like no other. Two years ago Makenzie had a dream, a wish, to raise 1 Million Dollars for a cure. Makenzie’s Mom Brandi reached out to Drew’s families non-profit, Butterflies of Hope, for support. When we told Drew what Makenzie wanted to do, he immediately wanted to jump on board and help. Drew has been helping Butterflies of Hope raise money for 6 years, and he’s been helping his friend, the one friend that understands his life raise money towards the Million Dollar Mission in honor of Gavin and in memory of Rylee and Xavier.
LEAP Award – Living, Encouraging, Achieving, Persisting
The LEAP Award recognizes an individual living positively with mitochondrial disease, highlighting the person’s accomplishments and volunteer service. 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.
After 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!
Stanley 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. The 2016 Stanley Davis Leadership Award Recipient is W. Dan Wright of Dallas, Texas.
Dan embodies selfless dedication. As past Chairman of the UMDF’s Board of Trustees Dan will end his board service as Vice Chairman. His work has guided the UMDF to a point where we are positioned to create opportunities that bring the entire mitochondrial disease community closer to treatments and cures.
The Vanguard Award
The Vanguard Award is presented to an individual who has been at the forefront of medical or scientific contributions in the fields of mitochondrial medicine or research for many years. He or she has demonstrated a lifetime commitment of progress towards a cure, whether through research or medical treatment. He or she has
diligently served the UMDF in a board or SMAB capacity, as an advisor, or through involvement with UMDF patient and educational programs. And he or she has provided inspiration to others in an effort to bring new scientific or medical experts into the fields of mitochondrial medicine or research.
The 2016 Vanguard Award Recipient is Richard Haas, MD. Dr. Haas is currently with the Rady Children’s Hospital in San Diego. He is the Director of the Mitochondrial and Metabolic Disease Laboratory – UC San Diego and is a UMDF Scientific and Medical Advisory Board member.
On behalf of the Board of Trustees, the UMDF staff and the mitochondrial disease community, UMDF Congratulates and thanks all of the awardees for their service and dedication to all.