Education, Support & ​​​Resources for RARE Disease Management!

Charity #: 802775791RR0001

syringomyelia, Chiari  Malformation & Rare Diseases

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.

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.  

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". 

Sepelene Deonaire, Registered Nurse

Rare Disease Expo

Ask The Expert Host

Meet our change agents who have worked hard in putting the Rare Disease Health & Wellness Expo together for you and helping to bring change to our communities. Change will happen ONLY when we work together in helping to build our communities. It takes a good heart, courage, dedication, hard work and the will to never give up to leave your footprint in society. Together We Are Stronger.

Carion Fenn

Carion Fenn Foundation

​​​Marcia joined  the Carion Fenn Foundation with a passion to support her community. She brings a wealth a knowledge to the planning of the 2016 Rare Disease Expo.  She is the Chair of the Ajax Accessibility Advisory Committee (AAC) and a member since 2012. In addition, she has 20 years of healthcare experience and over 5 years working with children and adults living with various disabilities.

Marcia is also a volunteer Educator & Master Trainer with the Workplace Safety & Prevention Services, where she provides health & safety awareness presentations (HSAP) to co-op students in secondary schools and training to employment organizations across Ontario. With this, Marcia was honoured to receive the 2015 Ajax Community Safety Award.  

Meet our Rare Disease Health & Wellness Expo Team

Marcia Bowen
Event Manager

Ajax Community Centre 
HMS Room

75 Centennial Road Ajax, ON L1S 4S4
​Carion Fenn Foundation

Cecil Ramnauth
Expo Management

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 so I am happy to be a part of this Event.

Thank you!

Carion Fenn is the Founder & President of the Carion Fenn Foundation & the Carion Fenn Network. She is also the architect behind Rare Disease Support Group Meetings, in partnership with Ajax Public Library and the Rare Disease Health & Wellness Disease Expo supported by the Town of Ajax. Carion is an award winning advocate receiving the Spinal Cord Injury Ontario (SCI-ON) & University Health Network (UHN) Patti Dawson Award, Ajax Civic Award from Town of Ajax (the Town's highest honour), Advocacy Award from Abilities Awards and the Accessibility Community Award from the Town of Ajax. She is also an Interior Decorator/ Designer and currently serving her 2nd term on the Town of Ajax Accessibility Advisory Committee. Carion is also a member of The Rotary Club of Pickering and the Town of Ajax Lakeview Community Working Group. Carion has earned considerable recognition with media appearances on CITY TV, CHTV, TV ONE, ROGERS TV, CFRB1010, and Flow 93.5 FM. Carion has also appeared as a feature designer in magazines to include: New Dream Homes & Condominium, Loulou Magazine, Sway Magazine, Amoi Magazine, and her work appeared in ads for Adicolor in Home and Décor Magazine. 

Beverly Holztman
Expo Management