Carion Fenn​​, President​ & Founder

Ajax, ON Canada

Aydin Leamen

Epilepsy Ambassador


Beverly Holtzman

Support Coordinator & Host

Toronto, ON Canada

The Carion Fenn Foundation Executive Team is responsible for working with our President to do the day to day operations of the foundation under the governance of the Board of Directors. 

Diane is a wife and mother of 4 children and recently became a first-time Grandmother. In 2014, after 6 years of looking for an answer to the pain she was suffering, she was finally diagnosed with Syringomyelia. For the Carion Fenn Foundation, Diane volunteers her time helping with our monthly support group meetings, is a member of our Executive Team, and works closely with the volunteers as Administrative Director. She also sits on the Board of Directors.  

Kajani

Bookkeeper

Toronto, ON Canada

Olivia Martan

Communications Coordinator

Toronto, ON Canada

​​Aydin Leamen was a very active and precocious 5 year old when he started displaying tick like movements. As time went on, they became more frequent, up to a 100 a day, and exaggerated. Aydin was diagnosed with Intractable Epilepsy and put on very strong medication. Initially he was unsure what was happening and resisted taking medication. The medication “changed” Aydin. He became angry, withdrawn, no longer interested in soccer or active sports. He seemed to lose his voice – confused and upset all the time questioning me “why me”. The initial medication made Aydin’s seizures worse culminating in a 13 minute seizure classified as Status epilepticus. His meds were once again changed with side effects that caused uncontrollable rage and behavioural outbursts. More medications and stays in hospital for EEG testing have yet to yield a solution for Aydin’s night time seizures. To help Aydin, Epilepsy Durham invited him to become an ambassador for Epilepsy. He suddenly felt a purpose and found his voice. Instead of letting Epilepsy control him, Aydin has chosen to control it through education and advocacy. On Purple Day 2016, Aydin, with his sister, presented a slide show with videos to all the children at Chris Hadfield PS on what Epilepsy is and how to treat those with Epilepsy. Since then they have been vocal advocates for Epilepsy online and at various events.


Dilara Leamen is a very compassionate, mature and determined 11 year old. She had to grow up quickly when her younger brother Aydin was diagnosed with Intractable Epilepsy. Having witnessed her brother’s many seizures, Dilara decided that she wanted to do more than just watch what was happening to her brother, she wanted to help her brother. Dilara became active with Epilepsy Durham as an ambassador and created her own online advocacy group, PurplWav. She has represented and spoken at many events in the community and her school. On Purple Day 2016, Dilara gave an interview on CKDO. She is a strong proponent of anyone, especially children, who can’t stand up and speak for themselves.

Eithan has been an Ambassador in building the Carion Fenn Foundation for 8 Years. He doesn't miss a flag raising we do. He's seen in pictures raising the Flag with Mayors of Town of Ajax and City Pickering. He plans on going to school to become a doctor to cure his mom, Carion. Eithan is the son of Carion Fenn, born following her diagnoses of Syringomyelia & Chiari Malformation. His birth made it in the medical Journal which is helping other. Eithan is a Competitive Gymnast at Acros Gymnastic Club. 


Through working with his mom and brother in advocating for others, Eithan has developed the passion for helping others. Eithan has a heart of cold and he's developed a passion for knowing when someone isn't doing too well. He often goes around town asking, are you ok? can I give you an hug. As you see his mom's compassion for others is apart of who Eithan is. 

Ron Fenn, is a Fire Protection Engineering Technology College Student. He's volunteered working with children and worked as an election officer with the Town of Ajax. 

My name is Beverly Holtzman, I have had LAM for 15 years and I love life. I just finished a 27 year Career with TD Bank Financial Group to take care of my health. I am ready to take the next step by getting ready for a double lung transplant at TGH. Lam is pretty rare only 2000 known in the world.

Celeste Howe

Communications & Membership Coordinator 

Ajax, ON Canada

Ron Fenn, is a Fire Protection Engineering Technology College Student and worked as an election officer with the Town of Ajax in 2014. He recently volunteered with the Town of Ajax Fire Department as a part of his college program. He's certified to work with children and been volunteering in building the Carion Fenn Foundation for 11 years. Ron is the original co-founder of support for those affected by Syringomyelia, Chiari Malformation with Carion. He knows what its like as a family member watching a loved one affected and being affected by a rare disease. He's a past volunteer with the Town of Ajax. Ron is CPR certified and have his smartserve which he recently used in volunteering at the Pickering Ribfest which its profits goes to help charities and nonprofits. Ron is dedicated and work hard to help those affected by Rare Diseases and look forward to becoming a Fire Fighter. 

Ashley Henery

Youth Ambassador & Program Coordinator

Carion Fenn Foundation

The Carion Fenn Foundation Ambassadors are key in helping to get the work out through attending Events, speaking and getting the word out there about Rare Diseases Affecting our communities.

Aghna Wasim

Support Coordinator

Ajax, ON Canada

Executive Team

Ron Fenn, Vice President & Co-Founder​ 

Ajax, ON Canada

Ashley is a grade 11 honour roll student at Ajax High School. She enjoys spending time researching about medical advancements, volunteering and making a different in her community. She is an active volunteer with the Town of Ajax, Lakeridge Health, ESP Worship Centre and The Carion Fenn Foundation. She is an aspiring doctor and looking forward to becoming a Paediatrician. Through her passion for medicine and her personal experiences she has gain an understanding and need to be able to make an impact for those who need compassionate care. 

Carion Fenn is the President of the Carion Fenn Foundation and Host of Health 180 with Carion Fenn on Rogers TV Durham, an Award-Winning inclusiveness and accessibility patient advocate. Carion is a Member of Lakeridge Health Board of Trustees, Board Quality Committee & Co-Chair Ajax Pickering Hospital Community Panel. She is an Accessibility Advisor to Town of Ajax Council on the Accessibility Advisory Committee. She is honoured to be selected for 100 Accomplished Black Canadian Women 2018. Member of the Jamaican Canadian Association. 

Diane Bateman

Administrative Director

Oshawa, On Canada

Dilara Leamen

Epilepsy Ambassador


Eithan, Vice President in training

Ajax, ON Canada

Aghna is a student at the University of Toronto Scarborough completing a Specialist with Co-op in Psychology. She is passionate about issues related to healthcare particularly mental health, chronic illnesses and neurodegenerative diseases; education; and community engagement. At school, she volunteers with UTSC Accessibility Services and is a research assistant at the Cant lab. In addition to her role at the Carion Fenn Foundation,  Aghna enjoys volunteering with Footprints 4 Autism, the South Asian Autism Awareness Centre and the Princess Margaret Cancer Centre. 

 

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