Lori Burnell Sames and her husband Matt have three beautiful daughters, Madison 13, Reagan, 10 and Hannah, 8. After college, before her 3 children, and becoming a stay at home Mom, Lori worked as a project leader of computer software installation for health care organizations. Little did she know her background would provide a building block for her next terrifying challenge, saving her daughter Hannah’s life. In 2008, their lives changed forever when Hannah was diagnosed at age 4 with Giant Axonal Neruopathy (GAN). GAN renders its victims quadriplegic, dependent on breathing and feeding tubes, and is terminal usually by the time a child reaches their twenties. At that the time of Hannah’s diagnosis GAN was not being researched in the US. Lori and Matt were told to go home and enjoy their daughter while they could. After the initial blow of this diagnosis, they decided to fight. As with any disease, someone has to be the first to be cured, and Hannah’s Hope For Giant Axonal Neuropathy, Inc., (HHF) a 501c3 public charity, was formed, and the race to save lives was born.
Lori, as HHF’s Executive Director, began to educate herself about GAN and is spearheading the coordination and collaboration of the research and scientific team. The first GAN Symposium was held in Boston in August 2008. Lori brought scientists from France, California, North Carolina, Boston, Canada and Tennessee together to collaborate, formulate a plan, and focus on therapy development. Since then Lori, through HHF, has orchestrated an annual GAN Symposium bringing the HHF team of Doctors and scientists together to discuss their recent findings and to brainstorm future R&D to develop a cure for this horrific genetic disorder. Through her direction, HHF has started a Natural History Study at Columbia University to chart the natural progression of the disease and is months from final FDA approval to begin a clinical trial of a gene delivery to the spinal cord which will stop progression and save the lives of these children. HHF’s gene delivery will have efficacy for other disease communities such as ALS and SMA (spinal muscular atrophy) one of the leading causes of death in children today.
In that clinical trials, research and development are considered experimental, are not covered by insurance and biotech’s usually stay clear of non-profitable rare diseases such as GAN, HHF has carried the burden of funding their mission to find a cure for GAN. To date, through primarily a volunteer staff and grassroots fundraising, HHF has raised over $3M. This is only the tip of the iceberg in moving the mountain of GAN.
As Lori trains, planes and automobiles from meetings with the NIH, FDA, various disease conferences and meetings with her own scientific staff she never falters. Working late into the night on a Pre Investigational New Drug briefing packet for the FDA is what she considers her ‘leisure reading’. Multi-tasking has been redefined with her ability to discuss scientific data with Ph. D, run a team of HHF volunteers through over 35 fund raising events annually, and patient advocates directly with families regarding dietary/supplements, OT/PT and often just a shoulder to lean on from one who understands how family life is affected by GAN.
In addition to all of this and more, Lori is a wonderful wife and mother. She attends all 3 of her daughter’s activities. While most soccer mom’s watch the games from the sidelines talking with others about play dates and cooking recipes, Lori is often seen off to the side on a conference call or following up with a contact, doctor or supporter. The schedule of Hannah’s personal doctor visits alone can be overwhelming for most parents but not for Lori Sames. She juggles this schedule like just another day in the park and still manages to always have a warm smile and welcoming hug for all her friends and family.
Before HHF and Lori’s tireless amount of energy there was no hope. Through HHF, awareness has spread and new families are being diagnosed. Thanks to Lori and her unconditional love for her daughter and as it seems all the children of GAN, these children and their families now have hope. Her conversations are intense and rapid, ricocheting from mom-mode to spouting the details of the viruses that will carry healing genes into the spinal cords of Hannah and eight other children. Her overwhelming excitement on accomplishments like, testing the virus at Emory University, and the fact that Hannah’s Hope Fund had already raised the funds to move GAN treatment so far, is contagious. “We’re making our miracle happen!”
The only thing that stopped Lori in her tracks during these crazy days is when she learns of other GAN families with affected children. She bears the magnitude of this burden solely on her shoulders although no one expects her to. She is constantly assured that she can’t be responsible for everyone dying of the disease, but the other parents are never far from Lori’s thoughts. Lori has to, and can, put aside her worries and guilt to constantly move forward. She never runs out of ideas.
Although most of what she does on a daily basis is out of the normal realm of most ordinary people, she is just as amazing at a parent teacher night or preparing dinner for her family. I hope you will agree Lori Sames is extraordinary and amazing and worthy of recognition for what she does and is doing for not only her daughter but children around the world. She is an inspiration to us all.
Lori and Hannah’s Hope Fund adopted Margaret Mead’s mantra, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.
With deep appreciation,
Kelly Obermayer, Director of Development/Hannah’s Hope Fund for GAN