In 2016, due to advances in genetic testing, Sydney’s mitochondrial disorder was identified as MEPAN, which is caused by a mutation in the MECR gene. This condition often worsens over time and there is currently no cure available.
Despite these challenges, Sydney graduated Summa Cum Laude from High Point University in May of 2015 with a BA in Special Education. In December of 2016, Sydney received her Masters Degree in Special Education with a concentration in Intellectual Disabilities also from High Point University. She has been working at Alliance of Disability Advocates for 4 and a half years and is currently the Information and Referral Services Manager. Sydney is passionate about helping people with disabilities reach their full potential.
Sydney is dedicated to raising awareness and funds for the United Mitochondrial Disease Foundation, hoping that one day there will be a cure for this debilitating, devastating, and many times fatal disease.
On November 29, 2013, the day after Thanksgiving, Sydney and her family tragically lost their nephew and cousin, Logan Aronson.
Logan was an amazing young man who was interested in international business and had a great love of history. He was known for his common sense, street smarts and good nature. Wherever he was, his quick wit and great sense of humor drew people to him.
Admirably, Logan uniquely danced to the beat of his own drum and was true to himself and his ideals. Logan was an inspiration to all in the way he loved life, his family and friends. Determined to turn this loss into something positive, Logan’s parents, Debra and Ron, requested a research fund be established with the United Mitochondrial Disease Foundation in memory of Logan and in honor of Sydney.
Nothing would have made Logan happier than to help Sydney and others with mitochondrial disorders.
Thanks to our generous donors the fund has raised a total of $714,250. This is how those dollars have been invested:
$200,000 toward MEPAN research lead by:
Deborah Murdock, Ph.D.,
Children’s Hospital of Philadelphia
The goal of this project is to develop therapies for individuals with MEPAN( mitochondrial enoyl CoA reductase-protein associated neurodegeneration)which is caused by a change in the MECR gene that is important for making fats in the mitochondria.
Individuals with MEPAN have movement disorders, deficiencies in vision, and difficulties speaking starting in childhood.
The researchers have used cells from Sydney’s skin to make a MEPAN cell line that can be turned into many other cell types, including neurons.
$100,000 toward Accelerator Research:
Morgridge Institute for Research
Accelerator Project: Structural and Functional Characterization of COQ9 in Facilitating Coenzyme Q Biosynthesis and Complex Q Formation
University of Utah
Salt Lake City, UT
Accelerator Project: Manipulating Mitochondrial Metabolism Via The Mitochondrial Derived Compartment Pathway
Accelerator Project: Investigating intrinsic and extrinsic factors influencing mitochondrial heteroplasmy
in mt-tRNA mutation-linked disease.
For more information on Cousins for a Cure, contact:
Sherri & Alan Breslow
firstname.lastname@example.org or (609) 760-5314
email@example.com or (609) 760-4029