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We are Bela Kafengauz and Alexander Tzetlin, we live in Moscow and represent PRISMS in Russia. Our eldest daughter Sophia was born in 1984, at the time when Smith Magenis Syndrome was yet to receive it’s name. When Sophia began to develop atypically, no one could tell us what was wrong. We were seeking help from numerous specialists up until 1997, when we were able to send her blood sample for FISH analysis to Canada. Most likely, Sophia was the first person diagnosed with SMS in Russia.
Sophia is 35 years old now. She lives with us, she can read, write, uses computer and smartphone. She is very sociable and her biggest hobby is talking to other people and learning more about their lives. Sophia keeps herself busy – she can talk on the phone, watch TV and listen to music all day long.
Being the first family on the way of raising and educating a child with SMS in Russia was not easy. We wanted to share our experience and make it easier for others. Bela wrote a book about our daughter’s infancy and her preschool and school years, and difficulties that our family had confronted. The book was published in 2008. Later in 2010, we created a website about SMS in Russian http://smith-magenis.ru/ . Over the years a Russian SMS community has gathered, consisting of the Russian families and professionals interested in this syndrome. We are proud to represent PRISMS in Russia and be of help for families like ours.
Callihan joined the PRISMS team as a Regional Representative for New York in September 2018. She’s very familiar with Smith-Magenis Syndrome. Her older sister, Briahna who is 28, was diagnosed with the disorder at 11 years old. Callihan and her family then turned to PRISMS conferences to get a quick education so they could mold their life to best fit Briahna’s needs. Conferences showed them that they weren’t alone in the world when it came to seeking help, so Bri could live the best life possible.
17 years later, they still go to conferences to make sure they’re up to date on any new developments. Callihan has been a caretaker for her sister since age 12. Bri went to her prom, she also went up to her college and stayed in the dorms. It’s very important to Callihan that her sister gets to experience the same joys in life that she does. Callihan has 26 years of experience growing up with her sister. She knows her sister’s needs and she knows how to be her sister’s voice, and she wants to do the same for other families in Central New York. She received education through PRISMS, and she’s excited to share that experience with families across her region.
My name is John Roseborough and I am the regional representative for Kansas. My daughter Elsie was born in 2012 and was diagnosed at age 3. I have been affiliated with PRISMS since 2016, soon after my daughter was diagnosed with SMS. PRISMS has been a source of information as well as a supportive community. I’ve gained so much learning from the publications and two conferences I’ve attended to date, and I’ve made many friends through the organization who have helped us come to terms with the diagnosis and helped us on the SMS journey.
My hope is to serve others in the community by being available as a point of contact for anyone diagnosed. I can share the resources that have helped us. My wife Joanna and I can connect families with ourselves or others who can provide empathy and if requested, guidance on things we or others have some experience with. We want to help others as there are so many uncertainties and challenges (and at times, joys) that come with the SMS diagnosis. We see a need for families in Kansas to meet up face to face periodically (establish more frequent social connections), and perhaps we can help with fundraising for PRISMS too!
As you may or may not know, we live in a remote part of southwest Colorado. Ali, our daughter, age 30 (4/11/1988) lives in the town of Grand Junction and we live about 120 miles from there in the town of Norwood. We are very close to the four corners area and about a 6.5 hour drive from Denver.
Ali was born at St. Mary’s Hospital in Grand Junction. While still in the hospital, we sent a DNA sample to University Hospital, in Denver, for a genetic work up. Ann Smith was working there at the time and two weeks later we received the news that Ali was missing a part of her 17th chromosome. There were only seven case studies on this disorder at the time and PRISMS was still about five years away from being formed. We knew so little at the time and I often wonder what it would have been like if we had had the PRISMS community to help us in those early days.
We met Ann Smith and Maggie Miller when Ali was about three and attended the very first PRISMS conference in Washington DC in 1998. We have attended four conferences since then, meeting other parents and individuals with SMS. The community of people we’ve met through PRIRMS has enriched our lives beyond measure and helped us feel a little less alone as we travel this challenging path of parenting an SMS individual. We consider the PRISMS family our “tribe” and are humbled by the love we feel from this group.
I am now at a position in my life where I can give back to this wonderful community. Its been a long and challenging journey with Ali but I feel blessed to be her mother. I would love to be able to help other parents by being a good listener and pointing them towards the resources they might need. I can especially relate to those who live in remote/rural areas.
My name is Ashton Chermaine and I am representing South Louisiana and the Gulf Coast. My child is Krista and she is 29 and was born in 1989. She was diagnosed in October 2000. I have been affiliated with PRISMS for over 15 years. PRISMS has provided a vast amount of education and resources that has helped our daughter lead a productive life. I have 30 years of experience raising a SMS child and feel that I can provide a comforting voice of experience.
I’m Carissa Le, from Lakeville, MN (30 miles south of the Twin Cities). My daughter, Scarlet, is 11 years old. She was diagnosed at 16 months in September of 2008. I’ve been a member of PRISMS for a few years and have attended the last 2 international conferences. When my daughter was tested for SMS, my mom found the PRISMS website and shared it with me. My jaw dropped as I found “twins” from all over the world in pictures on the site. I knew SMS was the diagnosis before the testing was even complete. I’ve used the website and those I’ve met thru online boards to help me as questions arise.
I can be of assistance to others in my area by leading them to PRISMS, giving them pamphlets and other literature, and hosting get-togethers.
I feel honored to be a part of PRISMS! My name is Rhonda Lowney and I represent Arizona. My daughter Jude was diagnosed at the age of two and I believe I have been a member of PRISMS ever since, the geneticist that gave us our diagnosis told us about PRISMS when she gave us the news and I don’t really know how we would’ve made it through the SMS diagnosis and life without PRISMS. The support from the organization, the conferences, and the connection with the other parents have been a life saver, both mentally and physically. I hope to help any newly diagnosed families in my area with any emotional and practical support available and I also hope to deepen the connection between the already diagnosed families that live here in our state. I am hoping that my seventeen years’ experience as a parent along with the amazing support of PRISMS will enable me to be of service!
My name is Ron Dixon and I live in Bettendorf, Iowa. My son Joshua, goes by Josh, was born in 1995 and was diagnosed with SMS at age 16. I have been a member of PRISMS since 2013. I decided to volunteer as a regional representative as a way to give back to the SMS family who helped us obtain a diagnosis and learn how to best advocate for Josh while giving him space to have ownership of his life to the greatest extent reasonable. I grew up in Iowa and know that it can be a bit of a challenge to obtain regular medical services let alone all the support for diagnosing and learning to thrive with a child with a rare disorder and we hope to help bridge that gap at least a little bit. The picture is Josh with his best friend Mason.
My name is Maria and I live in Boise, ID. I am a mom to 4 boys including an almost 2 year old SMS angel boy named Hunter, a bright and loving little guy, who loves snuggles and tickles, his big brothers and his iPad. Hunter was born July of 2017, we received his diagnosis at 9 weeks old in September 2017, this was a true blessing because it has helped us prepare and understand the many challenges we have experienced since the day he was born. I learned about PRISMS the day we received Hunter’s diagnosis but, I did not become a member until 2018 when I learned about the membership.
PRISMS has been a wealth of information and support for me since Hunter’s diagnosis. I want to represent PRISMS because I know what is it like being in the situation of learning that your child has SMS. It can be scary and at times feel lonely, and I want to be a person of support, someone parents can reach out to to help find information or professionals in the area, as well as emotional support.
My name is Caitlin Seldon, and I am the Regional Representative for Michigan. I am an elementary teacher turned stay at home mother for two beautiful daughters, Robin (9/11/2014) and Avery (9/29/2016). My husband and I live in Highland, where my husband works as a mechanical engineer at the General Motors Proving Grounds. Robin was diagnosed with Smith-Magenis Syndrome on October 31st, 2016 at 2 years old. We became members of PRISMS immediately following Robin’s diagnosis and have found the resources extremely useful. My husband and I attended our first conference in Pittsburgh last year. After attending the conference, I had a strong desire to become more involved in our community.
As Regional Representative, my hope is to provide emotional support and educational resources to newly diagnosed families. I am still learning how to navigate life with a child with Smith-Magenis Syndrome, but I would love to provide a shoulder to cry on and offer hope to anyone that may need it. I would also love to get local families together in an informal setting where everyone feels comfortable and has the ability to make connections. Please feel free to contact me at anytime!
My name is Julia Hetherington and I live in Beaufort, SC. My daughter is Rachel, born in 1994, and diagnosed with SMS at 8 years old. I have been a PRISMS member for 17 years. I served on the PRISMS board of directors for many years and am now looking forward to serving as the SC representative.
I am Wanda Stahlman and I live in Columbia, Mississippi. I have a 34-year-old daughter that was diagnosed later in her years with Smith-Magenis Syndrome. I know what parents, doctors, caregivers and the child goes through and am here to help all I can. I have been with PRISMS for 4 years or so and we are all a family growing. I know the hardships that a parent goes through.
We are Dr. William and Mrs. Elizabeth Yates (AKA Bill and Liz), parents of our SMSer 32-year-old daughter, Mary (AKA “Puzzle queen”). She is our one daughter of six children. We live in Northern Virginia, where Bill is an adjunct professor with two universities, specializing in the discipline of project management. Liz is a special education teacher and professionally certified educational therapist. After working through the puzzle of Mary’s various challenges for 28 years, we were finally made aware of SMS through our neurologist’s nurse. Finding the PRISMS website, we were immediately convinced to have genetic testing done. Being lifelong learners, we have researched and learned much (often by trial and error) about what makes Mary unique and how to work through those sometimes very challenging moments and days. With support from church friends, and PRISMS’ research, we continue to learn and hope to listen to, and offer support, to other families who have a desire to connect on this journey.
My name is Tracie Belcher. My daughter Emily and I live in the mountain state, West Virginia. Emily was born in 1990 and diagnosed with SMS in 2000. We have been a part of the PRISMS community since her diagnosis, having attended conferences, fundraising events and social gatherings. I also volunteered for a time as the PRISMS newsletter editor.
I have had the opportunity to be involved in the special needs community in my state by providing assistance and resources related to guardianship, estate planning, social opportunities and educational needs.
I look forward to being the regional representative for West Virginia and I encourage anyone in my state to contact me at any time if you need assistance, support or just someone to talk with who understands.
I am the proud parent of James Evan Franklin. Evan was born on November 2, 1982. His diagnosis of Smith-Magenis Syndrome did not occur until January of 1990 at the age of 7. Before that time, he had been diagnosed as learning disabled with ADHD. But we knew there was more to it than that. It was a relief to ?nally have a diagnosis but still very little was known at that time. My husband, John, and I joined PRISMS in 1993. It was a blessing to learn from others who were experiencing the same struggles with their children as we were. The information they provided helped us to educate those in the school system who needed to understand Evan. We attended the ?rst National SMS Conference in March of 1997. As a representative for the state of SC, I hope to share my knowledge and experience with other parents of SMS children and adults as they navigate through their journey. I plan to provide guidance and support as we discuss their situations and ultimately lead them to the available resources, contacts, etc. that can offer some resolution. It is also my intent to collaborate with other regional representatives to plan events so that families can connect face to face. I have attached a picture of Evan and myself. This is the most recent we have of the two of us together. He tends to not like to have his picture made… unless it’s with any type of character in costume!!
My name is Marni Rolston, and I live in Bozeman, MT with my husband, Jed Huseby, and our daughter, Ida May (age 14) and our son, Sorin (age 10). Ida May was born in 2005, and we received her diagnosis of Smith Magenis Syndrome when she was 9 months old. Ida participated in the National Institutes of Health (NIH) “Natural History Study of Smith Magenis Syndrome”, and we met Ann Smith on Ida’s first birthday. I became a member of PRISMS in 2006, and have attended every conference since then.
I was interested in representing PRISMS and becoming a Regional Representative because I want to help families understand that even though the diagnosis of Smith Magenis Syndrome can be frightening and overwhelming, there is a strong community of support within PRISMS and from other families who experience this syndrome on a daily basis. I understand that living in a remote part of the country with limited access to health care, therapies and other SMS families can be difficult. I also understand the daily anxiety and exhaustion of trying to help and advocate for a child with a rare and sometimes difficult syndrome. I want families to feel free to contact me with any question, struggle or celebration they may want to share about their SMS child. And I want to help them feel empowered, knowing that there is a strong, vibrant community of people within PRISMS who can help them answer almost any question they may have about SMS.
My name is Michele Zdanowski, and we have been PRISMS members for nearly 20 years. The first conference we attended was the Second Conference held in Arlington, Virginia. And that was just the beginning of our SMS friendships, and with each conference the SMS friendships and comradery continues to grow. Our daughter, Krista, was not diagnosed until the age of 6 years old. She spent most of her elementary years in inclusive general education. We spent a lot of time and effort advocating for her needs throughout her educational years. Here in Michigan school supported special education services continue until the age of 26, so now we are just beginning to navigate the next stages of her life needs and supports. I have always been so proud of PRISMS and the support it has to offer the families, friends, and healthcare professionals. I am so amazed of how wonderfully the organization has grown over the years. I am thrilled to be able to be a part of the Regional Representative program and I am looking forward to help and serve the SMS community.
We are Mark and Theresa Smyth and we live in Ottawa, Canada. We have three wonderful children, Thomas is 12, Julianna 10 and Daniel is 8. Mark has worked in the financial sector at RBC Dominion Securities Inc. a brokerage firm for 20 years since graduating from the University of Western Ontario. Theresa has been a Registered Nurse (RN) for 18 years at the Ottawa Hospital on a surgical floor. Our family leads a busy and active life with swimming lessons and baseball in the summer and skiing in the winter.
Our beautiful son Thomas was diagnosed in 2019 with Smith-Magenis Syndrome at the age of 11. We would like to assist newly diagnosed families with support and information. Raising a child with SMS is full of beautiful moments and is very rewarding, although we know it can be challenging as a parent. We would like to use our experience and resources to help and encourage other parents. We want parents to know that they are not alone and they can access help through PRISMS.
Mick is the regional representative for PRISMS in the United Kingdom. He is also a trustee to the Smith Magenis Syndrome UK Foundation. He is very proactive within the foundation giving support and life experiences to families new and old. Mick’s drive is to support families newly diagnosed with Smith-Magenis Syndrome and seeks to connect with them in his unique way.
Mick also supports dads living with Smith-Magenis Syndrome and assists in helping them to connect with each other, he is also keen to promote awareness and fundraising for children and adults with Smith-Magenis Syndrome. His son Riley was born in 2011 and diagnosed in 2014.
My name is Abby Bell. My son Turner was diagnosed with Smith-Magenis Syndrome when he was three years old in 2016. He is the third of four children. Life with SMS isn’t easy but we sure love Turner and we can’t imagine life without him. We found the PRISMS website almost immediately after getting his diagnosis. It was a huge help! We were able to learn and gain hope from the things that we read. We attended the PRISMS conference in 2018 and I can’t say enough good things about it. We met so many amazing people and discovered a whole new family and support group that we didn’t even know we were missing.
I’m so grateful to be a regional representative for PRISMS. I hope that I can be a help and support for you. Please reach out with whatever questions or concerns you may have. I am here to listen, help and support you. Welcome!
My name is Heather Boney. We live in Lafayette Louisiana. My daughter Jayci is 11 and was diagnosed at 6 months old. We were given a genetics report and PRISMS information guide. She is the oldest of my two children and she can light up the entire room with her infectious smile! Life may not be exactly what we had planned but it truly is a good life. The resources and family connections are so important in learning to live life with SMS! I’m am looking forward to attending our first conference in Dallas July of 2020. I am looking forward to starting this journey of regional rep and hope I can help other SMS families. Please feel free to reach out if you have any questions or concerns.
Casey comes to PRISMS having recently graduated this past May with her Master’s in Public Administration (MPA) with a focus on Nonprofit Management from Villanova University. While obtaining her MPA, Casey has worked in several roles at Children’s Hospital of Philadelphia. Her most recent assignment was to serve as study coordinator for multiple studies within the Division of Neurology, focusing on epilepsy and Rett Syndrome. As the study coordinator for Rett Syndrome, Casey worked with patient advocacy groups, academic groups, and pharmaceutical companies to create and execute research projects that help to improve the understanding of Rett Syndrome and explore potential treatments for the symptoms of Rett Syndrome. “As the Executive Director of PRISMS, I will bring my knowledge of academic research and public administration to the organization to support the patients and families affected by Smith-Magenis Syndrome, particularly in the expansion of potential research collaborations. I believe my experience in advancing research in Rett Syndrome will be of great benefit to the Smith-Magenis Syndrome community.” Casey has also been an active volunteer in the Philadelphia Area Disc Alliance, which is a membership-based sports nonprofit. In her free time Casey is an active participant in competitive ultimate frisbee traveling to tournaments across the country.
Bela Kafengauz & Alexander Tzetlin
Callihan Marshall
John Roseborough
Barclay Daranyi
Ashton Charmaine
Carissa Le
Rhonda Lowney
Ron Dixon
Maria Feagin
Caitlin Seldon
Julia Hetherington
Wanda Stahlman
Liz and Bill Yates
Tracie Belcher
Rhonda Franklin
Marni Rolston
Michele Zdanowski
Theresa & Mark Smyth
Mick Pearson
Abby Bell
Heather Boney
Casey Gorman