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Chromosome 22 Central
Support for Disorders of
Chromosome 22

 
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 C22C Crew

Meet the people behind the scenes

Stephanie Rese (St-Pierre) BA, HBSW, RSW - Founder

stephStephanie Rese is the founder of Chromosome 22 Central (C22C), a parent support network for people affected by chromosome 22 disorders. She has a Bachelor of Arts in Social Development Studies from the University of Waterloo and an Honours Bachelor of Social Work from Algoma University. She is a Registered Social Worker, working in the field of mental health, living in Timmins, Ontario. She is married with three children, one of whom is Maia, who has Emanuel syndrome (ES). Stephanie founded C22C after Maia was born and has been involved in supporting other families since shortly after her daughter was born and she discovered she was a carrier of a balanced 11/22 translocation. She has created most of the content for the website and continues to maintain it, and support new members and inquiries. In 2012, Stephanie received the Queen’s Diamond Jubilee Medal in acknowledgement of her work. Connect with her on Twitter, Instagram, LinkedIn or Facebook.


Murney Rinholm, BEd - Current President

murneyMurney Rinholm has been president of Chromosome 22 Central since 2002. She is mother to Atle Rinholm, age 26, with Emanuel syndrome. She lives in Fuquay Varina, North Carolina, with her family and is originally from Saskatoon, Saskatchewan, Canada, where she obtained her Bachelor of Education. She currently works as an administrative assistant for a major hospital home health department and previously worked as a special education teacher and paralegal specializing in estates and guardianships. She has also served as a past parent & family advocate for the State of North Carolina’s Office of Emergency Medical Services. Atle stays home with a certified nurse assistant but has a busy schedule of activities such as bowling, going to the library, horseback riding, Miracle League baseball and sled hockey. He is a huge Carolina Hurricanes fan and a personal friend of Stormy, the team mascot. Go Canes!

Murney works tirelessly behind the scenes speaking to families and managing the administrative side of C22C.

Melissa Carter MSc, MD, FRCPC, FCCMG - Medical Advisor

melissaMelissa Carter, M.D., is a Clinical Geneticist specializing in Developmental Disabilities. She works at CHEO, the Children's Hospital of Eastern Ontario, in Ottawa, Ontario. Melissa completed her medical training at McMaster University in Hamilton, Ontario, Clinical Genetics residency at the Children's Hospital of Eastern Ontario in Ottawa, and Developmental Pediatrics fellowship training at Holland Bloorview Kids Rehabilitation Hospital and Sick Kids in Toronto. Dr. Carter became interested in Emanuel syndrome when she was a resident in Clinical Genetics. One of her patients was a young girl with ES and faced with limited and outdated medical literature on the topic, turned to Stephanie for information. What followed was a wonderful partnership with C22C, which produced the most extensive study of individuals with Emanuel syndrome to date, as well as a paper investigating the proposed link between carrying the 11;22 translocation and breast cancer. Melissa continues to support C22C by answering questions and helping write and review materials.

Jemelene Wilson - Board Member

jemeleneJemelene Wilson is an author, speaker, and life coach. She is mother to Allison Wilson, age 21, with Emanuel syndrome. At six weeks of age, "Alli" was added to the family through the gift of adoption. Jemelene lives in Southwestern Oregon with her family. She has been a patient advocate at a local hospital and contributes articles on parenting, faith, and food to a variety of publications as well as her own website. As an Inspirational Speaker she brings stories of endurance through life's adventures as a mom with a medically involved child. She is an invaluable member of the team who is available for direction and advice.

Melissa Rabinovich - Board Member

Bio to come

Jessica Madujano - Social Media/Brand Specialist 

jessicaJessica Mandujano is a mom of two, wife, business owner, and advocate for her son Joaquin. Joaquin was born in 2015 with various developmental delays and was diagnosed in 2019 with Emanuel Syndrome. Jessica shares her family's ES journey via social media and advocates for inclusion and accessibility within the community by taking part in accessibility discussions and her family has also been featured in local news stories. 

 With 20+ years of professional experience in marketing, advertising, and event management - Jessica currently works in social media management and volunteers for Chromosome 22 Central.

You can connect with Joaquin & Jessica on Instagram: JoaquinsLife

Dr. Amira Khan - Contributor/Consultant

amiraDr. Amira M. Khan is a Research Analyst at the Centre for Global Child Health, Hospital for Sick Children, Toronto. A pediatrician and public health specialist by training, Dr. Khan has led development of the Centre’s online learning initiatives and nutrition training packages for health workers in low- and middle-income countries. Currently, she is leading and coordinating a pilot implementation research project in Pakistan, testing an integrated delivery model for primary health care and immunization services. She starts her Ph.D. at the Department of Nutritional Sciences, University of Toronto in Fall 2021. In 2021, Dr. Khan did a paid internship with C22C to facilitate a family engagement survey and prepare a report on family advocacy networks using C22C as a case study. She assists with website content and offers her support through ongoing consultation.

Rachel Martens - Contributor/Consultant

RachelRachel is a Research Engagement Strategist with CanChild and Kids Brain Health Network in Calgary, Alberta. She mentors researchers and families through the process of partnering in patient-oriented research through an online course. Rachel is mom to a young man who was born with Mosaic Trisomy 22 who passed away in 2020. In her time caring for her son, she developed a deep interest in equipping families with meaningful science to aid in their decision making as they raise their kids. She hosts a free, monthly family research rounds, online and is the host of My Complex Parenting Podcast. She assists with ongoing admin duties for Facebook, and contributes to C22C by offering advice and input on various projects. Find her on Twitter @RaeofSunshine79 and on Facebook   

Laura Munoz, MBE - Contributor/consultant

lauraMy name is Laura, we live in this long and skinny country of South America called Chile. I am a mother to five. In my family, Emanuel syndrome was discovered when the youngest of my kids was born, Damian, who is now 20. I cannot say that we have not suffered because we have and a lot, but we have grown as persons and found a family with members all over the world too. I am a NICU nurse, worked at the hospital for 33 years and retired. I now work as a teacher for the younger generations. Because of the pandemic I have become a Special Needs Teacher, OT, PT, Speech Therapist, gym teacher and special language strategist support for Damian. We attend school online from Monday to Friday from 9 to 11 am,  and you would be surprised by all the many things we have learnt and done. In my country, children with special needs attend to school until they are 26 years.

Laura has offered extensive support over the years to the Spanish members of C22C and translated the Parent Guidebook for Emanuel syndrome into Spanish. She continues to offer her support through ongoing contributions and ideas.  She has a Master degree in Bioethics.

Joanna Holmes - BSc (hons), MSc - Contributor

joannaJoanna Holmes BSc (hons), MSc Jo is a parent/ carer, blogger and has recently decided to step away from her professional life as a Speech and Language Therapist (SLT) to focus on being Mummy. She lives in the UK with her husband Drew and daughter Lucy who has Emanuel Syndrome. During her 19 years as an SLT Jo worked in special schools, general paediatrics, with bilingual families, with children and adults who stammer (stutter) and with adults with profound and multiple learning disabilities. She completed an MSc in Advanced Practice in 2014. She has attended numerous professional training courses covering topics as diverse as Cognitive Behavioural Therapy, Sensory Integration, Makaton Signing, Alternative and Augmentative Communication (AAC) and most recently completed her Post Basic Dysphagia qualification. Despite leaving her professional role as an SLT she continues to be passionate about communication, AAC and person centred services. She writes an often neglected blog about AAC www.mummyvsaac.blog (you can find her on Facebook @mummyvsaac and Twitter @mummyvsaac) and hopes to bring her parental and clinical skills together to contribute to the work of C22C.

Cindy Pommrehn - Contributor

CindyCindy Pommrehn is mom to Aedyn who was diagnosed prenatally with Emanuel Syndrome.  With degrees in psychology and business management, she is blessed to have some flexible and creative options for part-time work in both the mental health field and the financial industry.  Previously, both Cindy and her husband would’ve avoided the spotlight but now feel called to tell Aedyn’s story when opportunities arise to raise awareness about families on similar journeys. Cindy has presented to graduate classes, 2nd grade classes, the Early Childhood Council appointed by the Governor, pediatric healthcare boards, and community grant boards.  She and her husband have shared their family’s story on local TV, with donor/partner focus groups, for early intervention promo videos, at pediatric healthcare fundraiser galas and joined with other families to advocate with legislators. Cindy is an inaugural member of the Family Advisory Council for a healthcare organization with multiple service lines for children with special healthcare needs, and she and her husband are members of the Pediatric Family Advisory Board for their children’s hospital.

Nahani Johnson - Contributor

nahani

I am Nahani Johnson, a 45-year-old mom of one. Both of us have a mild form of 22q11. I was born with a learning disability (more of a processing disorder that wasn’t really recognized), and school was difficult growing up. Not knowing about ADHD at the time, as well as what can help it, marks were average and there wasn’t much opportunity for thriving. Growing up in adult years, though, I learned my learning style and have not stopped learning since, including about my condition, 22q11 deletion syndrome. Hobbies include, piano, drawing, crochet, and crafts, outings and time with friends and family. I have a male Rex bunny named Patches that is doing well! I am a retired health care aide, but also have other health care experience with the influence of my grandparents. My grandfather was an eye doctor who won the Order of Canada in 1985 for his work overseas in WW2 and is also the founder of Operation Eyesight. I am a jill-of-all-trades so to speak with interests in photography, and have spent much time since Covid on the piano for my mental and emotional health. Music is a major part of my life and I am also working on a classical piano album for 22q11. I also love helping friends and family with cleaning, as well as pet grooming, enjoying anything involving my hands. My newest venture is volunteering for Mission Thrift Store in Red Deer, Alberta, as well as writing (for the C22C blog) and helping others with 22q11. I am so happy to be part of the C22C team. The motto I live by with this is “Not Ashamed.”