Meet the people behind the scenes
Stephanie Rese (St-Pierre) BA, HBSW, RSW - Founder
Stephanie 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.
Murney Rinholm, BEd - Current President
Murney 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
Melissa 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
Jemelene 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
Award-winning journalist, producer and program executive Melissa Rabinovich has been a senior leader with Spectrum Networks, NY1 News for more than 25 years. Melissa serves as a content development leader working on short and long-form news programming. Her work has earned recognition from her peers with two Emmy Awards, a Gracie Award, two Edward R. Murrow honors and two New York Press Club awards.
Prior to NY1, Melissa was the Morning Show producer for News 12 Westchester and the Evening Producer for WICZ in Binghamton.
Raised in New York City, Melissa is very active in the community. In addition to Chromosome 22 Central, Melissa also serves on the board of the Seton Foundation for Learning, a school serving students with special needs on Staten Island, New York. Melissa also served as a board member for the Jewish Community Center of Staten Island where she was a founding member of the Special Needs Division, On Your Mark for people with disabilities, the Iron Hills Civic Association, and the Staten Island Borough President’s council for people with special needs.
Melissa has been named a Top 20 under 40 Winner by the Staten Island Economic Development Corporation, a Top Woman on Staten Island by the Star Network, a Top Woman in Business by the Queens Courier and honored by the Home Reporter in Brooklyn. She also received the Chai Society Outstanding Community Member Award from Wagner College, an award from Richmond University Medical Center’s MS Society, the Community Service Award from the Mental Health Society, the Next Generation Award from the JCC, the Media Award from the Iron Hills Civic Association, a Heart of Champion Award by the Frank J. Reali III Family Foundation, a community service award from Eden II and the Genesis Foundation and she was honored by the organization Lifespire for her support of people with developmental disabilities.
Melissa is a Dean’s List graduate of Binghamton University. Her husband, Oleg who is currently battling Stage 4 Colon Cancer is an attorney and on the board of Northwell’s Staten Island University Hospital Foundation. They are the proud parents of Ethan, Dylan, and Ava. Dylan was diagnosed with Emanuel Syndrome at six weeks old.
Jessica Mandujano - Social Media/Brand
Specialist
Jessica
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
Dr. 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
Rachel 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.
Laura Munoz, MBE - Contributor/consultant
My 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.
Joanna
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.
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.”
Affiliate member, Canadian Organization for Rare Disorders