Leena Panwala, President – Fairfield, NJ
Leena Panwala is a dedicated and loving wife, mother, a successful entrepreneur and a cofounder of INADcure Foundation, Inc. She graduated from Pennsylvania State University with a bachelors degree in Political Science in 2004. Leena’s daughter, Ariya was diagnosed with Infantile Neuroaxonal Dystrophy in September 2016. After months of sleepless nights scouring the internet for treatment options and hearing stories from other families affected by INAD,she realized the INAD community needed a voice. Leena and her husband, Anil Panwala created the INADcure Foundation, Inc. along with the help of Megan Thomas, Esq. and Kristin Phillips on Dec 27th, 2016.
As president of INADcure Foundation, Leena has been working hard to establish strong connections within the scientific community in addition to biotech companies that have interest in gene therapies for rare diseases. With a professional background in operations and management Leena has helped in ensuring the success of new businesses that are just starting out. She hopes to bring that knowledge to help the INADcure foundation reach its goals of pursuing a treatment/cure for Infantile Neuroaxonal Dystrophy in a timely manner.
Kristin Phillips, Vice President – Kerrville, TX
Kristin holds a Bachelor of Science in Interdisciplinary Studies from the University of Houston in Texas. After undergraduate school, she taught middle-school English in California, and did grant work for the San Diego Catholic Diocese for Educational Technology.
Kristin and her husband, Andrew Phillips, married in 2006, and had their first child Jacob, in 2009, and Kieran in 2011. Jacob was born normal and without problems until around thirteen months when he caught a virus and started showing symptoms of regression and developmental delay.For over three years while trying to get a diagnoses, and watching their child lose all of his physical mobility, Kristin and Andrew met with and consulted numerous top doctors from all over the country including institutes such as Texas Children’s Hospital, CHOP, Dell, Duke, and John Hopkins, all without answers or clues as to what might be causing Jacob’s regression. Nobody had ever seen anything like what Jacob’s symptoms were presenting. In April of 2013, Kristin and Andrew were contacted by Baylor to participate in the Whole Exome Sequencing Study; they said Jacob would be a perfect candidate. Four months later and another MRI, they finally had a diagnoses, Jacob was diagnosed with Infantile Neuroaxonal Dystrophy at the age of four, and was given a one-year life expectancy. Throughout her son’s journey and personal mission to get him well, she studied the disease process and made a promise to her son that she would get him out of this. By January 2014, Kristin had raised and secured a private donor to fund the Gene Therapy Study at UCL with Dr. Manju Kurian. Continuing the need to keep moving forward, Kristin helped put together other INAD parents to fundraise for another research idea that Dr. Paul Kotzbauer had shared at Washington University. In 2015, the parents had successfully raised close to $200,000, and that number continued to grow in the following years. During the waiting period, Kristin turned to Functional Nutrition to help her son, and was able to reduce many of his symptoms, such as seizures, urinary retention, and inflammation. Kristin is an avid researcher, life-long student, and wellness coach to a wide variety of people and families with various health goals. She is currently continuing her graduate education in Integrative and Human Nutrition. As her education continues and grows, so will her practice and expansion of care. After formally starting her own practice in November of 2016, and primarily working with adults, she continues to help families with homemade blended diets and gtube feedings for children with special needs to improve their quality of life.
On December 23rd, 2016, Kristin and Andrew lost Jacob after a long battle with this disease, he was seven years old. In an effort to help her son continue his personal mission of beating this disease, she donated his brain tissue to research and joined with Leena and Anil Panwala to continue the vision of raising awareness and finding a cure.
You can read more about Jake’s story and the Baylor Exome Sequencing Study here: http://www.tmc.edu/news/2015/09/the-genomics-revolution/
Megan E. Thomas, Esq., Secretary – Lawrenceville, NJ
Megan Thomas is an attorney and an Episcopal priest from central New Jersey. She concentrates her legal practice in trust and Megan Thomas is an attorney and an Episcopal priest from central New Jersey. She concentrates her legal practice in trust and estate planning and administration, including planning for artists and collectors, and for parents of children with special needs.
She has extensive experience in estate planning through the use of charitable trusts, private foundations, family partnerships and conservation easements. She also regularly handles the administration of estates and trusts including Internal Revenue Service audits and related litigation on behalf of corporate and individual fiduciaries.In addition to her work as an attorney, Megan is the pastor of St. Luke’s Episcopal Church in Ewing, New Jersey. It is a small and racially diverse congregation near Trenton, that has actively welcomed people with physical, intellectual and emotional disabilities into its faith community. Megan finds that her legal work has made her a better pastor, and her pastoral work has made her a more compassionate lawyer.
Megan’s daughter, Sonja Olson, was diagnosed with NBIA disorder in 2007. After Megan’s older children married, it seemed prudent to find out what type of NBIA disorder Sonja has. Testing revealed that Sonja has atypical NAD (also called PLA2G6-associated neurodegeneration or PLAN). Sonja is now 21 years old and looks forward to graduating from her special school this year. Sonja, Megan, and her husband, Tom Bodenberg, live near the Delaware & Raritan Canal outside Princeton.