Lis Heininger

In Memory of Lis Heininger

“I don’t want anybody else to go through what I’ve been through.

If I could just prevent one person from having these problems, then it’s worth it.”

Dr. Lis Heininger

Our dear friend, Lis Heininger, founder of the Corning-Finger Lakes Lyme Disease Association in New York, passed away at home on Monday, September 29, 2014. Passing at the age of 48, she leaves behind her loving parents, her dear husband Andy, and a very devoted teen-age daughter, Marisa.

For those who didn't know Lis, she was a wonderfully brilliant lady and long time volunteer Lyme patient advocate who worked with many people over the years to assist them with their Lyme-related issues.

Lis spent the earlier part of her life (over 30 years) undiagnosed and untreated for Lyme disease. The first indication Lyme disease might have been the source of the various growing symptoms she experienced appeared at a very young age when she had a strange rash after camping with her family in New England.

Her symptoms began increasing in number and impacted her more over the next few years. As a gymnast, volley ball, tennis and track team member, she became concerned when her eye sight began to fail. She went on to develop numbness in her limbs and was eventually diagnosed, or mis-diagnosed, with MS.

For the twenty years Lis was told she had MS (multiple sclerosis) she was treated unsuccessfully by various physicians for a condition she did not have. As a national spokesperson dedicated to educating people on the affects of MS, she was considered a favorite "poster child" by those in the MS movement. She spent countless hours speaking to national and international audiences. Unfortunately, when she informed them of her new diagnosis, like others that have been correctly diagnosed after years of having an inaccurate MS diagnosis, she was shunned and ignored by the very people she loved and worked so hard to assist.

Once correctly diagnosed with chronic Lyme disease Lis was treated with long term antibiotics and began to improve. Unfortunately, she was in the late chronic stages of Lyme disease at that point in time and the damage that occurred prior to receiving appropriate treatment was only partially addressed. But, Lis improved as time went by and she was determined to not give up!

Lis worked tirelessly to spread Lyme disease awareness for the past decade and made many friends in the Lyme community along the way. She brought in doctors and other experts to speak at programs for local community groups. She was a guest speaker at the Corning Community College's presentation of Under Our Skin, a college where Lis once worked as a grant director for the Early Childhood Professional Development Center.

Lis actively helped with legislation designed to improve the situation for other Lyme patients. She had an extensive email distribution list and stayed up-to-date on the latest research. Many will remember Lis rolling around (and goofing around) in her wheel chair, always with a smile on her face, while attending various Lyme disease conferences over the years. She had a wonderful sense of humor and never missed the opportunity to share a funny joke.

Several years ago Phyllis Mervine of LymeDisease.org (formerly CALDA) organized an effort to collect donations to help pay for in-home nursing care for Lis while her family was at work and school. Lis, under the care of the local health department, had fallen out of her wheelchair and had to spend time in the hospital. As a result of the accident she suffered more neurological damage; however, she was overwhelmed by the kind and generous people in the Lyme community who supported her and she truly appreciated their efforts.

Our hearts are heavy and we are filled with sadness over the loss of such a dear lady. We will pray for comfort for all of her friends and family, all the while knowing in our hearts she has finally made it to heaven where she is now dancing and singing with the angels.

Memorial Services

Phillips Funeral Home and Cremation Service, 17 West Pulteney Street, Corning, NY 14830 on Thursday, October 2, 2014 from 5:00 pm to 9:00 pm. The funeral service will be at Grace United Methodist Church, 191 Bridge Street in Corning, on Friday, October 3, 2014 at 11:00 am. A committal service for the family will follow at Chapel Knoll and they will return to the church for a luncheon.

With flower arrangements in place, the family asks that memorial gifts in Lis' honor be directed to a scholarship fund for Lis's daughter, Marisa. Checks may be made payable to: Andrew Heininger, at P.O. Box 1272, Corning, NY.