Charity 802775791RR0001

Airing on Rogers TV Durham Channel 10

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. 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 10 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. 

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.

Tejus Tuppal is a second-year Commerce student at UOIT. He is passionate about issues related to healthcare, education, employment opportunities for all and personal development. He sits on the Academic Council at UOIT as an Undergraduate Student Representative, is an executive member of two campus organizations and is a Peer Leader who helps with September Orientation at the school. Outside of school, he likes to volunteer at Lakeridge Health as an Emergency Volunteer and Research Assistant. In his spare time, he likes to volunteer, go on walks, play tennis and read.

Executive Team

Ron Fenn, Vice President & Co-Founder​ (Ajax, ON Canada​)

Lori Hart


Support Supervisor

(St. Catharines, ON Canada​)

Diane Bateman

Board Secretary & Administrative Director (Oshawa, On Canada)

Carion Fenn​​, President​ & Founder

(Ajax, ON Canada​)

​Carion Fenn is an award winning advocate. She is the recipient of the Ontario Volunteer Service Award 10 Years, Spinal Cord Injury Ontario (SCI-ON) and University Health Network (UHN) Patti Dawson Award, Town of Ajax Ajax Adult Civic Award (the highest honour of the town), Advocacy Award from Abilities Awards, and the Accessibility Community Awards from the Town of Ajax. She is currently serving her second term on the Town of Ajax Accessibility Advisory Committee as well as being a member of the Canada 150 Planning Committee representing Salem Heights and Downtown Ajax and is also a member of the Town of Ajax Lakeview BLVD EA working group. 

Beverly Holtzman, Event Co-ordinator & Support Host

(Toronto, ON Canada)

I was diagnosed in 2009 after suffering for almost 10 years, fortunately I found a Specialist who listened. My syrinx runs from my T4-T10 and it does cause multiple issues which change from time to time. Before my diagnosis I was a active person a mother of 2, a wife, working in the community with a Compassion Clinic then 5 years in a call center. Since my diagnosis I had to give up my job as I couldn't sit for long I had vertigo and ringing in my ears. Today I stay at home looking after my husband who is also "physically challenged". That is not to say I am not busy I still enjoy cooking, painting, writing, drawing, crocheting, crafting, making jewelry when I am able. Plus I help a rescue shelter for at risk cats. As I tell people I may have SM but there is no way I am letting SM have me, it’s this attitude that keeps me going staying positive as much as possible. Support Manager: Social Media, Social Network & Monthly Support Group Meetings.

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. 

Sepelene D, 2016 Ask The Expert Host & Event Managegment (Ajax, ON Canada)

Tejus Tuppal


Event Co-ordinator​​

(Whitby, ON Canada)

Joseph Atallah

BookKeeper

Since immigrating to Canada from Guyana in 1969, I spent most of my early years in the Toronto area with friends and relatives building a career among others. My family and I moved to Ajax in 1990 where I watched my kids become adults carving meaningful destinies for themselves.  My formative years in a third world country taught me to share and to give back without the expectation of reward. This form of grounding became a core value, and it was with this motive that I developed a passion for volunteering, mentoring, and for giving back through networking, team work and outreach with the broader community, local government, social and interfaith organisations, advocating for a measurable and sustainable difference through collective awareness, tolerance, celebration, and mutual understanding.

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.  

Amna Hussain

Public Relations

I have also had the distinct pleasure of volunteering for my Town of Ajax, and for serving on the Board of Directors for two major Charitable and Cultural Organisations engaged in virtually all facets of community life with a focus of shaping government policies and programs aimed at creating lasting legacies through a culture of inclusion. I love my Town and the embracing partnership it provides towards building vibrant and sustainable neighborhoods that also includes wellness and environmental stewardship. It is this spirit of welcoming, openness and engagement that makes me proud to be a contributing member of the DACE Advisory Committee for the Town of Ajax and for being a volunteering member of the Carion Fenn Foundation.  

Since immigrating to Canada from Guyana in 1969, I spent most of my early years in the Toronto area with friends and relatives building a career among others. My family and I moved to Ajax in 1990 where I watched my kids become adults carving meaningful destinies for themselves.  My formative years in a third world country taught me to share and to give back without the expectation of reward. This form of grounding became a core value, and it was with this motive that I developed a passion for volunteering, mentoring, and for giving back through networking, team work and outreach with the broader community, local government, social and interfaith organisations, advocating for a measurable and sustainable difference through collective awareness, tolerance, celebration, and mutual understanding.

Sepelene is a Registered Nurse with a Bachelor of Science in Nursing and a Master in Education. She has had a long and successful career in the Health Care and Education Internationally and Nationally, with many of those national years spent in Durham. Sepelene is presently a Volunteer Outreach Educator and a Elected Regional Delgate with the Canadian Diabetes Association. She is also a Peer Leader with Local Health Integrated Network Self Management Program facilitating and empowering others to better manage their chronic conditions and to live a healthy life. She says it is very satisfying to watch participants affected by chronic conditions successfully manage their health conditions by using the skills and tools of the programs. This Expo really intrigued Sepelene because she is always very excited when Organizations and or individuals use effective strategies as a conduit to bring communities together, and raise those communities. Sepelene firmly believes that this strategy of raising awareness and partnership with the community is very effective tool to uderstanding Health and Wellness, Rare and ot so Rare Conditions. The Benefits of this Strategy have lasting short and long term benefits for our community which leads to the Mantra of the Expo; "Together We Are Stronger". 

Marcia Bowen


2016 Expo Manager

(Ajax, ON Canada)

Remi Kowalski
"The  Last  Minute" 

Video-Photo-Audio-Lighting, Production & Videographer Services

Cecil Ramnauth, Event Hospitality Management (Ajax, ON Canada