Cynthia Frisina, Executive Director, Founder
Cynthia’s daughter, Cathryn, was a 29 week, 3 pound preemie, diagnosed with Cerebral Palsy at 10 months of age . The exact cause of Cathryn’s Cerebral Palsy remains unknown. Despite her rough beginning and uncertain future, Cathryn has grown into a delightful 13 year old honor roll student, who sings, loves adaptive rock climbing and plays the piano. After absorbing the shock of Cathryn’s initial diagnosis, Cynthia began a frustrating search for reliable Cerebral Palsy information, treatment outcomes, research and resources. She soon realized the amount of misinformation and the significant research and treatment gaps that existed for kids with CP. Taking matters into her own hands, Cynthia launched the nonprofit foundation, “Reaching for the Stars. A Foundation of Hope for Children with Cerebral Palsy.” in late 2004 with Anna Marie Champion, another equally committed mother of a young daughter with CP. Together these two mothers were determined to fill a critical information, advocacy and education need for parents of children with CP.
Cynthia is passionate about changing the Cerebral Palsy status quo. In a few short years “Reaching for the Stars” has become a worldwide beacon of hope for children with CP, championing global pediatric CP research, parent education and advocacy, and growing RFTS into the largest global parent-led, pediatric Cerebral Palsy nonprofit foundation with a dynamic social media presence and expanding chapter network.
Cynthia has spent more than 25 years as an award winning marketing professional for Fortune 500 companies, healthcare firms, and technology startups. She is a member of the AACPDM Advocacy and multimedia committees, on the External Partners board of the Centers of Disease Control and Prevention (CDC) Birth Defects and Disabilities Branch, a member of AHRQ and recipient of several awards for her volunteer service and work on behalf of people with disabilities. Cynthia is a published author and sought after speaker on healthcare marketing and social media topics, holding a BA from University of Illinois and Masters degrees from Northwestern University. Cynthia lives in the greater Atlanta area with her two beautiful daughters, Cathryn and Alexandra. You can reach her at 855.240.RFTS, via email at email@example.com, on Twitter, or connect with her on LinkedIn.
From the moment of birth, Michael A. Kutcher faced monumental challenges. He was born as the “unexpected” twin brother of Christopher “Ashton” Kutcher in Cedar Rapids, Iowa on February 7th, 1978. Michael’s first challenge arrived moments following delivery. He entered the world notably smaller, weighing less than 5 pounds, less responsive and struggling to take his first breath.
Intense medical intervention and Michael’s powerful drive to survive resulted in weeks and months of steady progress, but not without lifelong effects. By age three, Michael showed signs of significant developmental delays due to his neurological issues. He was diagnosed with Cerebral Palsy before he entered school.
Michael grew alongside his twin brother and older sister learning to compensate for his limited eye sight, hearing, less than average speech capabilities, limited mobility issues, impulsivity, and compromised motor skills. Again, he met the multiple challenges of Cerebral Palsy head-on with a deep desire to thrive.
Despite the early odds, Michael graduated from Clear Creek Amana High School, alongside his twin brother. He once again overcame major obstacles to earn his Bachelor of Science from Mount Mercy University, majoring in Business Management and Finance He is currently employed by Transamerica Retirement Services, is an inspiring motivational speaker and devoted father.
In 2010, Michael began to follow his passion for CP advocacy supporting CP specific research and awareness for “Reaching For Stars”. His signature ability to succeed is evident in his recent work with “Reaching for the Stars” raising political awareness on Capitol Hill, fund raising on a national and local level, and speaking on behalf of RFTS at various events including the Centers of Disease Control and Prevention and the AACPDM.
Michael‘s strength and endurance are likely byproducts of living more than three decades with Cerebral Palsy. He is living proof of how extraordinary abilities are developed when one faces extraordinary challenges. Michael is in the process of writing a book about his life and overcoming adversity. He resides in Cedar Rapids with his 6 year old son, Jackson.
Wendy’s daughter, Kelsey, suffered a stroke the week before she was born. She has grown into an amazing 10 year old and has left hemiparesis, a form of Cerebral Palsy. Having had a career in the pharmaceutical industry, Wendy searched for the most recent research and progressive treatments and therapy for Kelsey. While she was surprised that there were not more double blind, placebo controlled CP research studies, she was encouraged when she found “Reaching for the Stars” where parents and clinicians were coming together to advocate for research funding to find new treatments and a cure for CP. Kelsey has participated in clinical trials for Constraint Induced Therapy at UAB Sparks Clinic, and Umbilical Cord Stem Cell infusion therapy at Duke University.
Wendy graduated from Miami University with a B.S. in Business Administration in Marketing and Economics. She also pursued graduate work in Pharmacoeconomics from the University of Washington. During her tenure with Eli Lilly & Company, Wendy worked with physicians, residents, pharmacists, hospitals, managed care organizations, and insurance companies. She was involved in coordinating Phase III Clinical Trials and grant proposals with Universities and Medical Institutions. Wendy is excited about furthering the research opportunities for children with CP in the area of stem cells, neuroplasticity, and emerging intensive therapy. She resides in the Atlanta area with her husband and two children, Kelsey and Christopher. Follow Wendy on Twitter
Dr. Lisa Thornton
Dr. Lisa is a Pediatric Rehabilitation Physician and the medical director of Pediatric and Adolescent Rehabilitation for Kids Rehab, a joint program between Schwab Rehabilitation Hospital and LaRabida Children’s Hospital both located in Chicago. She is assistant clinical professor in the departments of Pediatrics, and Orthopedics & Rehabilitation at the University of Chicago Pritzker School of Medicine. She received her undergraduate degree at Fisk University, and her medical degree from the University of Michigan. She completed pediatric specialty training at Children’s Memorial Hospital in Chicago and a rehabilitation residency at the Rehabilitation Institute of Chicago, where she led her peers as chief resident. Her medical practice is dedicated to the care and treatment of children with disabilities.
Dr. Lisa has appeared as a health commentator on The Today Show, CNN, Good Morning America, The CBS Early Show, and ABC’s World News Tonight. She has been a guest anchor on the ABC News Now web cast “Healthy Life”. She is the former host and medical consultant of “Health Corner” which aired on Lifetime TV. She also writes the monthly health column for Chicago Parent Magazine. Dr. Lisa wrote the forward to the Weight Watcher’s book, “Eat! Move! Play! A Parent’s Guide to Raising Happy, Healthy Kids”.
Dr Lisa is a strong advocate for her patients and believes that well-informed parents are best-equipped to guide their children to optimum health.
She has lectured widely at academic institutions (Northwestern University, Tulane University, University of Chicago), corporations (Boeing, Kraft Foods, The Leeza Gibbons Memory Foundation), and to the Michigan Legislature. She is the founder and director of C.A.M.P. Schwab (Children with Adapted Mobility Play), an organization with a mission to encourage athletic participation among children with disabilities. Always driven to improve the health of children everywhere, Dr. Thornton and her family sponsored a little boy from Zambia who needed reconstructive surgery. He lived in her home for over a year while he received the necessary procedures which she arranged to be provided free of charge.
Brad is a U.S. Navy Veteran and a father of three beautiful children. His oldest son, Jacob, was born at 30 weeks weighing only 2 pounds 13 ounces. Despite a problem free 6 week NICU stay after birth, the doctors discovered he had Periventricular leukomalacia (PVL), a form of white-matter brain injury, before he was discharged. At age two, Jacob was diagnosed with Spastic Diplegia, borderline Quadriplegic, Cerebral Palsy, affecting his ability to move and control all four limbs. Like many others, Brad and his wife Becca were told the only thing they could do for their son was to continue therapy to try and improve Jacob’s future quality of life. Though non-verbal, Jacob is now mainstreamed with typical peers and uses an iPad to communicate and participate in school activities.
With the disbelief that there was nothing else they could do, Brad began searching for different treatments for Cerebral Palsy and support from other families who had experience with this “cerebral palsy” diagnosis. He quickly realized the need for more CP resources for families and decided to take advantage of his background in Information Technology to create www.LittleBeluga.com. This is where he has shared the story of how he built a Remote Control Power Wheels vehicle for Jacob.
Brad’s initial intent for LittleBeluga.com was to create a resource for families, who are raising a child with Cerebral Palsy, to share their reviews on equipment and Augmentative and Alternative Communication (AAC) aids. Over time though, his website has been evolving into a resource for fathers to share their own out of the ordinary, and sometimes extreme, projects for their children with CP. Brad is a highly motivated parent, advocates for Inclusion and hopes to persuade other fathers to speak up and get involved. Follow Brad on Twitter. (@belugacp)