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Unlocking Autism State Representative Board
Tamara Sharp, Kentucky, Representative Coordinator/Parent2Parent Network Coordinator
Mary Kay Betz, Illinois, Marketing & Research Director
Christie Atkins, BA, M Ed, Georgia, Educational Specialist/Homeschool Advocate
Holly Bortfeld, Pennsylvania, Diet and Nutritional Consultant
Jane Tallman, New Jersey, Adult Services Coordinator
Kelly Longenberg, California, Adults on the Spectrum Consultant
Jack and Becky Sytsema, Florida, Family Ministries Director/Co-Director
Anne Ferioli, Massachusetts, Autism Judicial Advocate
Lynn Notgrass, Virginia, Miliary Family Liaison
Theresa Cedillo, Arizona, Vaccine Compensation Consultant
Cathy Mayrer, Wisconsin, Child Safety Coordinator
Jean Haase, Missouri, UA Representative List Serv Manager
Jennifer Brown, New Jersey, Northeastern USA Regional Representative
Stacy Cayce, Oregon, Northwestern USA Regional Representative
Lisa Morrell, Utah, Southwestern USA Regional Representative
Tamara Sharp Representative Coordinator/Parent2Parent Network Coordinator
Tamara Sharp resides in Western Kentucky. With early dreams of becoming a CPA she studied at Murray State University, but health problems of her own soon halted that pursuit.
She continued to work locally as a secretary for some time before learning of the new life she'd soon bring into the world. Knowing the medical issues that she faced, she went into the pregnancy aware that there would be possible be risks associated with medications she had to take. However, autism was not initially presented as one of them. Born May 1991, Blake was diagnosed fetal valproate syndrome; partial & absence seizures; very mild cerebral palsy; & GERD. But years later observations led the family to have further concerns. He was tested and diagnosed with autism.
With the support of family, Tamara rushed to find answers, reasons for all the struggles he was to face. So many questions and not even the "experts" seemed to be able to provide much hope. As a means of reaching out for information and support she looked into online chat rooms where it was as if God had lead her into the right direction. She found a glimmer of hope in the friendships she made online where many of their stories seemed so similar to her own. She has coordinated with others serving as a chat room host on America Online within the People Connection, Parent Soup, & Health Channel.
Blake is currently active in Special Olympics bowling. He was previously on a casein-free diet, but as he's aged doesn't seemed to have the issues that troubled him at a younger age when consuming products of this type. Various therapies including Infant Stimulation, Sensory Integration, Physical, Occupational, Oral Motor, and Speech have all contributed greatly to his successes. Blake attends public school and is in special education but is integrated into the regular classroom during a portion of the day.
She is a member of both National Organizations for Rare Disorders and Canadian Organization for Rare Disorders where she's been able to find other parents who have children with fetal valproate syndrome or other anti-epileptic drug syndromes. Continued communication with online friends led Tamara to the position she holds today with Unlocking Autism today where she serves as not only a Kentucky Representative, but also Representative Coordinator and Parent 2 Parent Network Coordinator and continues to find parents/caregivers online and elsewhere who are in need of information regarding autism spectrum disorders.
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Mary Kay Betz, Marketing & Research Director
Mary Kay and John Betz are the parents of three boys and live in Montgomery, Illinois.
Their oldest son, Ryan, born in 1999, had a diagnosis, of Aspergers. Riley, born in 2000, was diagnosed with autism. Both boys are recovered. Patrick, born 2004 is typical.
Mary Kay joined Unlocking Autism in 2003 as Illinois State Representative. She now serves as Midwestern Regional Representative and Marketing & Research Director.
Mary Kay has diligently worked as an advocate for families and children with autism and other developmental disabilities. She is able to help parents with IEPs, State Services and other areas essential to the needs of ASD children,
She also works as Information and Referral Coordinator for the Autism Society of Illinois.
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Christie Atkins BA, M Ed, Georgia, Educational Specialist/Homeschool Advocate
Christie Mitchell Atkins grew up in Fayetteville/Lincoln County, Tennessee. She earned her BA from Lipscomb University (Nashville) in Mathematics with a minor in Sociology. She completed her M.Ed. from Trevecca University (Nashville) in Administration and Supervision. She served as a classroom teacher in secondary mathematics at Ezell-Harding Christian School in Nashville for eight years before moving to Georgia. Since living in GA, she has taught in the classroom part time, but mainly continues in education by working as a private tutor. Currently, she tutors secondary mathematics at Darlington Upper School. She maintains a current teacher's certificate in both Tennessee and Georgia.
Christie has been active in coordinating projects to help her community better understand autism. She has conducted in-service trainings for the Floyd Co. Police Department, Floyd County 911 Dispatchers, and a foster parent organization. She also has given numerous guest lectures to education and psychology students at various NW Georgia colleges.
Christie and her husband, Jon (History Professor, Berry College), live in Rome, Georgia with their teenaged son with autism and their younger daughter. Their daughter attends public schools in Floyd County while their son is a home schooled student. Christie and Jon feel like yeast treatment, GFCF and SCD diets, B-12, allergy treatment, and addressing heavy metal issues have been especially helpful in helping their son become a better learner. Dr. Richard Layton (www.allergyconnection.com) coordinates Douglas' treatment plan and a local Rome Family Practitioner plays a significant role is Douglas' medical care. The parents have used The Listening Program, Earobics, Brain Builders, and CompuThera to name a few educational interventions. Christie feels strongly that, "To maximize the effectiveness of any educational program for a student with autism, the parents and educators MUST have a clear, current understanding of what autism really is. Equally important to the educational process are biomedical interventions. If a child has a biomedical trigger for his autistic behaviors, the medical aspect must be addressed by a reputable physician to maximize any educational program."
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Holly Bortfeld, Orrtanna PA, Diet and Biomedical Specialist
Holly has been tutoring parents on dietary interventions and biomedical treatments since 1998. She founded the first ever biomedical support group (www.autismrecoverynetwork.org) and created what became www.GFCFDiet.com and has spoken at many conferences and organized 3 major biomedical conferences. Holly has lived in Florida and PA and can help with autism services in those states as well. She is a charter Unlocking Autism State Representative, a Generation Rescue Angel, a resource rep for Autism NDI, PA rep for A-CHAMP, a Kirkman Family Consultant and a Talk About Curing Autism (TACA) mentor mom.
Holly also worked families and donors for AutismCares after the gulf coast hurricanes in 2005-2006.
She has 2 children that she homeschools - Max is 12 and has autism and hyperlexia, colitis (in remission), multiple allergies and immune dysfunction; and Greta is 14 and has ADD, OCD, dysgraphia and Aspergers.
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Jane Tallman, Adult Services Coordinator
Jane and Rick have been married since 1969 and are the parents of five adult children and grandparents of seven children. They are both charter Unlocking Autism State Representatives serving the state of New Jersey. David , who has autism, was born in 1976.
David has made much progress through biomedical interventions that have been used since he was 5 years old.
It has been a long journey with different life experiences.
In 2002 Jane ASAH awarded Jane their Humanitarian Award for her advocacy and leadership on behalf of New Jersey citizens with special needs and their families.
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Kelly Longenberg, California, Adults on the Spectrum Consultant
Kelly Londenberg was not officially diagnosed with ASD until her teenage years. Since then she has become an integral member of the autism community. She serves on the Inland Empire Autism Society of America Board of Directors and has served in a variety of capacities with Unlocking Autism since the age of 17.
While pursuing a college degree with a major in psychology, Kelly holds a job as an instructional assistant in a middle school classroom for students with autism. She has also worked as a respite and social recreation coach provider. Kelly frequently speaks at conferences educating people on life with autism, attends IEP meetings, helps with behavioral ideas for parents and has lobbied both her state and federal legislators.
Kelly has developed and personalized many in-home programs for children with autism. Additionally, she has a documentary called "The Autistic ABA Therapist."
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Jack and Rebecca Sytsema, Florida, Family Ministries Co-Director
Jack and Rebecca Sytsema are both ordained Christian ministers who have been involved in international prayer ministry since 1993. They have also been involved with several autism groups over the past several years and are on the Honorary Board of Advisors for Unlocking Autism.
They live in Melbourne, Florida.
Jack currently serves as Executive Vice President of Finance for the International Child Development Resource Center (ICDRC) and Creation’s Own (CO). Founded by world-renowned doctor J. Jeff Bradstreet, M.D., ICDRC is a non-profit corporation that works jointly with CO, a medical practice, to bring together traditional science and medicine with recently developed and recognized treatments and therapies to establish the preeminent center for treatment, education, and research for the cure of autism and other developmental disabilities. The medical practice currently is helping 3,000 patients all over the world. Jack received his Bachelor’s degree from Calvin College, and a Master of Divinity from Fuller Theological Seminary.
Rebecca currently serves as Director of Children of Destiny, and works as a freelance author and editor. She has coauthored eight Christian books to date. She works from home where she is first and foremost mom to three great boys: Nick, born in 1998 (full-syndrome, severe ASD) Sam, born in 2000 (moderate ASD) and Trey, born in 20004 (NT).
They first became interested in autism when their then 2-year-old son, Nicholas, was showing signs of developmental delay coupled with intestinal difficulties in mid 2000. In January, 2001, he was diagnosed with autism. They believe in the power of prayer and believe that God’s hand is firmly on Nicholas’ life. They have implemented several other interventions for Nicholas, including the gluten- and casein-free diet, several biomedical interventions, and an intensive program of Applied Behavior Analysis.
While each intervention has helped Nicholas come to new levels of success, they firmly hold to the belief that the most powerful intervention they have brought into their son’s life has been to give him over to God and allow Him to order our steps concerning Nicholas. Although the path has been a difficult one, they have seen steady progress as God works new miracles day by day. God has yet to disappoint them in any area with which they have fully trusted Him!
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Anne Ferioli, Massachusetts, Autism Judicial Advocate
Anne and Dante Ferioli live in Massachusetts with 3 sons. They were unknowingly introduced to autism in 1995 at the birth of her first son. Anne and Dante had 2 more sons in 1997 and in 1999. All 3 boys were later diagnosed on the autism spectrum.
Anne first became actively involved in the autism fight in 2000, when she answered Nancy Cale’s “call to duty”. Nancy spoke of her family and the many other families who were searching for pieces of the puzzle. Anne joined Nancy, Shelley and dozens of parents in meeting in Louisiana after forming the first group of Unlocking Autism State Representatives, becoming a charter State Representative.
In 2001 Anne would host the first of many awareness and fundraising campaigns in her area. She would later team up with Stephan Shore for a series of autism segments on a local radio show. Anne has also hosted as well as spoken at autism conferences throughout her state.
She has been involved with The Federation for Children since 2003, teaching special education workshops as well as participating in their parent to parent program. Anne has educated hundreds of families on special education law as well as advocating on their behalf at IEP meetings.
In 2005 Anne joined the Justice Resource Institute. As an Education Specialist for JRI, Anne works with Massachusetts Department of Child and Family, insuring that all children receive an appropriate education. Although Anne works with children of all diagnosis, her passion lies with children on the autism spectrum. She has worked with hundreds of social workers, therapists, foster parents and others in the community to educate them on the unique needs of ASD kids. Anne has also consulted with other Education Specialist throughout MA. It is her goal to see more programs and education for autistic children living in state care.
Anne's boys are doing well in their community. They play sports and participate in Boy Scouts. Her youngest son is no longer on an IEP. She believes that it is partially due to the fact that he received the least vaccines and partially because he was involved in his brother’s therapy sessions from the day he came home. All three of the boys are fully included in their schools. Anne states that there are still some minor challenges from day to day. “Each boy has such a different personality, but the road has become a much smoother ride.”
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Lynn Notgrass, Virginia, Miliary Family Liaison
Lynn Notgrass and her husband have been married since 1999, he is on active duty with the Army and they presently live in Fredericksburg, VA.
She is the mother of three sons. Steven, born 1989 (bipolar), Madison 2000, born (recovered vaccine injury, and Nathan, born 2002 (gluten and casein intolerance).
Her autism journey has taken her to Maryland and Tennessee to testify on bills to remove mercury from vaccines. She also testified before the National Immunization Board in Atlanta, Georgia in 2004 with regard to her son's vaccine injury at age four.
Lynn was the parent who initiated the National Phone-a-thon to President Bush in 2004 in an effort to have mercury removed from vaccines. She has instituted various diets and therapies to help her son recover from his vaccine injury.
Having served as an Unlocking Autism Georgia State Representative, Lynn is now serving that position in Virginia.
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Theresa Cedillo, Arizona, Vaccine Compensation Consultant
Theresa and Michael Cedillo have been married since 1988 and are parents to a beautiful daughter, Michelle, born in 1994. Theresa became involved in autism advocacy tin 1998 shortly after Michelle was diagnosed with autism.
Following a normal infancy, Michelle regressed into autism and many other associated health problems following the MMR vaccination and thimerosal containing vaccines she received. In 1998 Theresa began researching the link between vaccines and autism and related GI disease that Michelle has experienced following her vaccinations. To the extent she am able with Michelle's extensive needs, she is involved in advocating on all levels, including politically.
In 1998 Michael and Theresa filed with the Vaccine Compensation Injury Program. In June 2007, Michelle's case was chosen to be the first test case for the thimerosal/MMR autism vaccine injury theory in the US Court of Federal Claims. Two other test cases for the same theory were heard in 2007 as well. All of our decisions are still pending.
Theresa is a Charter Unlocking Autism Arizona State Representative, serving since 2000.
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Cathy Mayrer, Wisconsin, Child Safety Coordinator
Cathy Mayrer and her husband Rick, an ER doctor live in Medford, Wisconsin with their three sons, Adam (12), Seth (6) and Jack (8.) Jack has Autism and Seth has Cerebral Palsy. Like most parents, Cathy become involved in autism for personal reasons when son Jack was diagnosed severely autistic at 3 years and 5 months. She immediately sought out help for Jack, and ended up hiring her own team to do ABA therapy as well as Greenspan's Floortime.
She implemented a billboard campaign with the help of the Dan Marino Foundation and Charlie and Maura Weis. This proved to be extremely helpful in the community, as it not only raised awareness, but took away the taboo of the label.
Shortly after Jack's diagnosis, he wandered away from home in a matter of seconds. He was found 4 blocks away in a bank parking lot, having to cross two highways and a bridge. Cathy knew then that she had to seek out help to keep him safe and herself sane
Cathy has been very involved with our local law enforcement and school officials to maintain a sense of safety for our children, as well as educate people on autism and how to deal with an autistic child versus a typical child. She sought the advise of several law enforcement officers who have children with autism and decided they had to do something before it was too late. Cathy had heard of an autistic boy that wandered off in PA and was found only 1/4 mile from his home, frozen to death. Her heart grieved for that family and she vowed to do something so that would never happen to Jack.
Cathy found Project Lifesaver on the internet and she and a friend raised the initial funds to buy the starter package. Another family with an autistic son had the idea of doing a yearly golf outing to maintain funds to run this program. This August 1st, 2008 will be their 4th annual golf outing. They are proud to be the most active Project Lifesaver county in the state of Wisconsin.
Last May (2007) my son Jack wandered again into the woods. He was missing an hour plus, but thankfully was found. A month later while having his yearly EEG done in the local hospital she and Jack saw that a 7 year old autistic boy was missing an hour from their area. After being released from the hospital Cathy helped search for this precious little boy. Words can't describe the love and compassion of so many that gave of their time for 5 days, searching for little Benjy Heil. Benjy was found 1/4 of a mile from his home in a small pond. He had drowned. Immediately Cathy knew there were things she needed to do in case something like this ever happened to Jack. Since then, Jack not only is in swimming lessons, but swimming lessons with his clothes on, as most accidents don't happen with swimming trunks on. She talked to numerous counties in our state about implementing a tracking device, like Project Lifesaver and worked with Children's Miracle Network to advocate for start up grants.
Cathy says she is just a typical parent that, like most , are passionate about securing the safety of their children. Many of these children don't have a clear distinction of what is safe and what is not. That's where the community comes in. We need to plan for the worst and pray for the best.
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Jean Haase, Missouri, UA State Representative Lisr Serv Manager
Jean Haase is the proud mom of three young men, John (1986), neurotypical, Jimmy (1989), Asperger's Syndrome and Jeffery (1990), Bipolard Disorder with psychotic features.
She has lived in Florisssant, Missouri, a suburb of St. Louis for 19 years . Jean's sons are the world to her and she is proud of each and every one of them. They are unique in their own ways and that makes them special people.
She has been married for 25+ years to her wonderful husband, Mark who has been my rock, especially in the last few years. They have 2 pets, a yellow Labrador named Penny Lane, and a calico cat named Smokey.
Jean is a charter Unlocking Autism Representative and attend the first UA training in Baton Rouge in 2000. She also attended the "Hear Their Silence" Rally in Washington, D.C., in 1990. Once she heard the UA mission she was hooked. Jean has served as Unlocking Autism Missouri State Representative since 2000 and also is the manager of the UA State Representative List Serv
Jean no longer works outside the home although she is an Americorps Volunteer. (Americorps is the domestic version of the Peace Corps). She starts her second year with Americorps in September 2008 and is looking forward to the challenges the new year will bring.
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Jennifer Brown, New Jersey, Northeastern USA Regional Representative
Jennifer Brown is a multifaceted autism advocate who wears many hats. She has been with Unlocking Autism for many years and was recently named the Northeastern Regional Representative. She has been on the advisory board for Autism Family Services and assisted several years running with their fundraising walk, raising money to provide services to families in New Jersey. Some of the programs include Surfers Healing and Wrightslaw Boot Camp.
Jenn was invited to attend the first year long class and internship of the Council of Parents, Advocates and Attorneys pilot Special Education Advocate training program. She also recently graduated from the 8 month long program Partners in Policymaking where she learned about all facets of Disability in the state of NJ. She hopes to use this information to assist the state in solving the looming crisis for providing housing to people with disabilities in NJ. Jenn currently works for United Cerebral Palsy of Northern, Central and Southern NJ as a Service Coordinator for 18 independent apartments in her home town! She is, of course, a dedicated mom to her three children, Katherine, Connor and Kyle, her son with autism. She and her husband, Mike, live on a small farm in Western New Jersey that brings them much needed peace.
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Stacy Cayce, Oregon, Northwestern USA Regional Representative
Stacy Cayce lives in Oregon and has three children. When her youngest, Derek, was born she was working as a doula and had the dream of becoming a homebirth midwife. She soon discovered that Derek wasn't the same as her other two children, his development was delayed and she found herself searching for answers.
At the age of two a friend suggested she look at autism, and within weeks she had scoured the internet with everything she could find. She immediately started Derek on a GFCF diet and saw his dramatic changes in weeks. She posted her story online and was asked by Unlocking Autism to come on board as a state representative in 2004.
She has put her dreams of being a midwife aside and has found herself drawn to autism advocacy. She also works with other state and national organizations promoting autism awareness, biomedical treatments, and autism recovery.
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Lisa Morrell, Utah, Regional Representative
Lisa Morrell, our SW Regional Representative, has a BA in General Studies with emphasis in Communication and Journalism. She is married and has three children; her youngest son, Richie, was diagnosed with autism in 1999 at age 2. At the time, she was working full time as a paraprofessional, and decided to stop working in order to devote her time to helping her child with autism. She has had training in PECS, TEACCH, ABA, SOCIAL STORIES, BEHAVIOR INTERVENTIONS, SENSORY DIETS, AND IEP/ADVOCACY TRAINING.
She has also lived overseas with her family, and has experience with the military programs, Dodd’s Schools, EFMP, and TRICARE. It was during this time overseas, that she Joined Unlocking Autism as a Representative in 2002.
Currently she and her family are residing in Utah, where she works part time as a substitute teacher. In her spare time, she serves as an area leader for The Family to Family Network, a program to help people advocate and get them signed up for services. She is also a member of the the Adult Services Committee with the Utah Autism Council, the Autism Coalition for Utah, and the Utah legislative coalition.
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