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Registered Charity # 802775791RR0001

Alex Blair

Board Member

Aghna Wasim

​Mental Health Program Co-ordinator

Kajani Ravindradas

​Bookkeeper

Victor Hyman

Board Member

Charity Purpose:


1. To promote health by:

a. providing individuals with Syringomyelia and Chiari Malformation with support services such as peer support groups, counselling, educational workshops and seminars, and resources for chronic disease management; and

b. educating the public and individuals suffering from Syringomyelia and Chiari Malformation about rare diseases, their affects, and how to assist those suffering by hosting the Rare Disease Expo.

2.To do all such things as are incidental or ancillary to the attainment of the above purposes.

Our Founder

Education, Support & Resources.

Diane Bateman Board Member

Kenrick Jean-Pierre

​Director Member

Eithan Case

Vice President

in Training

Nicole Hanson

Director Member

Meet our team:

Hajira Tabassum

Bookkeeper

​​

Mission Statement:

Our mission is to increase awareness, provide support and help find solutions in moving forward for those affected by Rare Diseases or Disorders such as Syringomyelia, Chairi Malformation and more. 

About Us:

Ashley Henery

Ambassador

Carion Fenn

President & CEO

Queensly Bude

Communications 

Coordinator

Ron Fenn

Vice President

Carion Fenn Foundation is a registered charity established to promote health by providing support services and resources for chronic disease management, while educating the public and those suffering with Syringomyelia and Chiari malformation about rare diseases. Our programs include a Monthly Support Group Meeting, Mental Health Symposium, Mental Health Forum, Health Expo, Durham Mental Health Day at Queens Park and our 24 hours online support.

Out of every 5 Canadians aged 20 years or older, 4 are at risk of developing a chronic condition according to the Canadian Government statistics. It is estimated that 1 in 12 Canadians are affected by a Rare Disease or Disorder; most of these, are life threatening or severely debilitating. 

There are over 7,000 known rare diseases or disorders. 350 Million people globally are fighting rare diseases. Rare diseases impact more people than AIDS and Cancer combined. More than 50% of those affected are children. 30% of children with rare disease will not live to see their 5th birthday. We strive to help those who are affected, from suffering in silence, including EDS, Arthritis, Epilepsy, Cancer, Lam, Autism, Familial Ataxias, NF and more. 

Living with an ailment doesn’t have to be a life sentence, we are able to help community members living with an ailment learn how to reset their lives, so that they are able to be a part of the community. We bridge that gap of the loneliness and the lack of understanding community members often go through after diagnoses. Our focus is to address the needs of individuals; providing them with support services, counselling, educational workshops, seminars and other resources. 

Chronic diseases such as diabetes, cancer, arthritis, mental illness, cardiovascular and chronic respiratory diseases are the major contributors that reduce quality of life, diminish productivity, increase hospitalization and health care costs, as well as premature death in Canada.


​​​​Those who we help face astounding adversity, including “misdiagnoses, unnecessary surgeries, lack of treatment options and support, financial hardship, and early death”. ​​

Our vision is to reach a point where no sufferer has to go through their illness alone; without needed support systems and resources. We envision a world where patients can do more than just ‘survive’. They can ‘live’ and be a part of the community, and be the best version of themselves with the support and resources they deserve.  

Our foundation was founded by an award-winning inclusiveness and accessibility patient advocate Carion Fenn. Carion is the President & CEO of the Carion Fenn Foundation and Host of Health 180 with Carion Fenn on Rogers TV Durham. 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 & Vice Chair on the Accessibility Advisory Committee. Carion is a member of The Rotary Club of Ajax, The Jamaican Canadian Association and honoured to be selected for 100 Accomplished Black Canadian Women 2018.

Carion has received several recognitions for her community service, including the Ontario Volunteer Service Award (10 YRS) from the Ontario Provincial Government, Spinal Cord Injury Ontario & University Health Networks Patty Dawson Award, Town of Ajax – Adult, Ajax Civic Award, Education Award & Accessibility Award. Abilities Awards – Advocacy Award.

Our foundation has been supported by The Rotary Club of Ajax, Ajax Legion and has community partnerships with the Ajax Public Library, Lakeridge Health and AjaxPickering.ca.  ​

We support communities by partnering with organizations like the Ajax Public Library, where we hold a Monthly Support Group meeting. In addition to the Support Group meetings, the Carion Fenn Network is a unique social network, available 24 hours a day, where patients, family and loved ones can share, learn and support each other.  

We provide resources about Chronic and rare diseases, their affects, and how to assist those suffering by launching the first Rare Disease Expo supported by the Town of Ajax and sponsors by The Rotary Club of Pickering and Rare Patient Voice Canada.  

We advocate and raise awareness through flag raisings, municipal proclamations (Town of Ajax, City of Pickering and many more), television interviews (Rogers TV), Newspapers (Snapd, News Advertisers), Bowl for Rare Disease Fundraiser, and a Karaoke Fundraiser. 

In recognition of International Mental Health Day, we hosted a Mental Health Forum, in partnership with Ajax Public Library. This forum included a Passport Session with participants such as Lakeridge Health, Ontario Shores, Durham Mental Health, Lam Canada, NF Ontario, Sankat Mochan Temple and more. The second half of the forum included an expert panel with an audience and Q&A sessions. 

In recognition of Mental Health Awareness Week, we host a Mental Health Symposium in partnership with Ajax Public Library and Lakeridge bringing together mental health organizations to have an honest discussion about mental health with the community. We bring Organizations such as Durham Mental Health, Lakeridge Health, Ontario Shores, Kennedy’s Intervention Services Inc. and other.

Helping those who are affected by Syringomyelia, Chiari Malformation and Rare Disease or Chronic Disease is a community effort. It is important for all of us to work together to help build our communities because Together We Are Stronger®. 

Through donations, memberships and partnerships, we are able to honour our charitable purpose. 

Ken Anderson

Board Member

Beverly Hotlzman

Support

Co-ordinator