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

Charity #: 802775791RR0001

syringomyelia, Chiari  Malformation & Rare Diseases

Donate
Donations to the Carion Fenn Foundation allows us to keep our focus on patients and those affected by Syringomyelia, Chiari Malformation and Rare Diseases providing Education, Support and Solutions to navigate their disease or condition. Every donation matters. There are over 7000 known rare diseases or disorders and 50% of those affected are children. 

Get involved

Sponsor & Partnerships
Over the years we have had the opportunity to help others and build meaningful relationships through our event and the programs we offer. Our Sponsors and Partners plays a keys role in allowing us to grow, offer support, and help support communities. We partners with the Ajax Public Library for our programs and we can partner with you in helping to build our communities. Sponsorships range from sponsoring our Foundation, one of our programs or event providing your services through our program to our members. Working together is key in building a stronger community and that’s why we say Together We Are Stronger. Please email support@carionfenn.org and request more details on how you can become a sponsor or partner with us. 

Carion Fenn Foundation has many ways that you can help us in helping others by providing a variety of opportunities for you to get involved with the organization. We have a stake in each other and its important for us to work together in helping to build a stronger community support, so get involved now. 

Bowl For Rare Diseases (Last Day in February): 

The Carion Fenn Foundation organizes a Bowl For Rare Disease fundraiser annually. These fundraisers attract teams of various organizations that represent those with rare diseases and disorders and people from the community. The bowling fundraiser is always a success and various prizes are awarded to different categories of bowlers. All funds raised through this fundraiser go towards the monthly Rare Disease Support group held by the Carion Fenn Foundation.

Volunteer
Give time: Volunteer - Join our team, advocate for change, increase awareness and help build our community. Help others, support events, become a leader or activist. Carion Fenn Foundation invite interested candidates to submit their application to join the CFF Board of Directors, Executive Team or Network Admin Team. We are interested in hearing from individuals who are interested in being a moderator, bloggers, welcoming angels and help to support others through our Social Network (Carion Fenn Network) and our Facebook Group and Fan page. The Carion Fenn Foundation invite interested candidates to submit their Resume to join our team at smcm@carionfenn.org

  • Programs: Support Group, Rare Disease Expo, Mental Health Forum, Fundraising and Sponsorship. Patient, School, Government Advocacy.
  • Communications: Advertising, Brochures, Editing, Flyers, Marketing, Newsletter, Policy, Setting up interview, liason with media, Website, etc... 
  • Executive Assistant: Nonprofit Administration, Management, Governance.
  • Finances: Accounting, Bookkeeping.
  • Grant Writer: Funding.
  • Support: Social Media, Social Network & Monthly Support Group Meetings.
  • Professional Experts: Share professional expertise on our Social Network, Support Group Meetings, or at one of events.

Connect others to our Rare Disease Movement. If you know a friend, family member or anyone who is living with a Rare Disease or Disorder, refer them to our Community Support.

 

Karaoke Fundraiser:


A karaoke fundraising where you can sing your hearts out while helping the Carion Fenn Foundation to provide support for those affected by Rare Disease and help facilitate a better mental health for patients to get support and support each other. You can sign up to participate in a night filled with karaoke singing. All welcome to join. All funds raised through this fundraiser will go towards the month Rare Disease Support group held by the Carion Fenn Foundation.

Participate
We have several events that you can come out and show your support. Come out to an event such as our Flag Raising with Mayors in different Cities or Town’s. Attend one of our Fundraisers such as Bowl For Rare Diseases, Karaoke, Rare Disease Expo, Mental Health Forum or Join in one of our Support Group Meetings and learn about Rare Diseases and help support others affected.

Post
Join us in social media: Twitter: @carionfenn; Facebook; Instagram: