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

Charity #: 802775791RR0001

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.  

Tejus Tuppal is currently a Biological Science student at the University of Ontario Institute of Technology. He enjoys taking on leadership roles both on and off campus. He is currently involved in three campus organizations as an executive member and volunteers in the emergency department of Lakeridge Health hospital. He is passionate about issues related to health and medicine. In his spare time, he likes to volunteer, go on walks, play tennis and read.

Nisha Khan is a Journalism student from Toronto, Ontario with a background in criminal justice. She carries a solid understanding of law and holds a passion for reporting injustices that are happening all over the world. After becoming a published author at the age of 17, she has gone on to work in the communications field in film festivals, magazines and online. With a clear passion for media, Nisha hopes to create her own media company. 

Beverly Holtzman

Exhibitor Manager

Toronto, ON


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.

Tejus Tuppal
Fundraising and Special Events 
Whitby, ON Canada

Nisha Khan



Ajax, ON Canada

syringomyelia, Chiari  Malformation & Rare Diseases

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.

Sepelene Deonaire

Host Expert & Workshop Manager

​Ajax, ON Canada

Executive Team

Lori Hart

Support Manager


St. Catharines, ON Canada

Marcia Bowen

​Event Manager

​Ajax, ON Canada

The Carion Fenn Foundation Executive Team is responsible for working with our President to execute the overall direction of the organization from the board and implement our programs. 

  • Executive Assistant: Nonprofit Administration, Management, Governance.
  • Accountant: Accounting and Bookkeeping. 

  • Grant Writing, Fundraising, Sponsorship, Health and Policy: 

Donna Mullings

​Hospitality Manager

​Rare Disease Expo

Ajax, ON Canada