Alicia McLeod

Syringomyelia & Chiari Malformation Patient Story

Workshop Speakers: 

The Islamic Society of Ajax, by the Grace of Allah SWT, completed construction of the First Masjid in the Town of Ajax in the year 2016. The Masjid is located at the intersections of Taunton and Harwood Ave.  Ajax Masjid has become a focal point for the Muslims of Ajax. It is centrally located in the midst of a Muslim community and services the religious, social and recreational needs of this community. 

Our Expo teaches how to improve quality of life through patient stories, experts on manage symptoms of chronic pain, Research Information and navigating the healthcare system to improve access to medical professions. Workshop presentations FREE to the public for 2 hours.  

Once registered, you will receive a confirmation email with details for this free event to join. Please share. 

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Legion Branches are the cornerstone of communities across Canada, and provide one of the largest volunteer bases in the country. With 1,400 Branches from coast to coast to coast, our members provide local services and supports to build a stronger Canada.

Alicia has a passion for helping others. She is a manager for a charity who helps individuals and children experiencing homelessness. In her free time,  she raises awareness about rare diseases, mental health and homelessness through fundraisers, her business and social media.  At sixteen her best friend Justice was murdered this turned her world upside down. Before finding a passion for philanthropy she would donate in his memory whenever a grocery clerk would ask her if she’d like to donate. A few years later she was diagnosed with chiari malformation, syringomyelia and a panic disorder. She chooses to rise above her trials and tribulations by being the change she wishes to see I’m the world! 


​6:30pm – 6:35pm    Welcome

6:35pm – 6:50pm    Syringomyelia & Chiari Malformation:                                    Patient Story (15 Mins)
6:50pm – 7:20pm    Rare Disease Research –  (30 Minutes)
7:20pm – 7:35pm    Advocacy Organization - (15 Minutes)
7:35pm – 7:50pm    Sickle Cell: Do’s & Don’t: Mother &                                        daughter patient story (15 Mins)
7:50pm – 8:30pm    Medical Expert – Managing Chronic &

                                Rare Diseases (30 Minutes)​​

Opened in October 2019 Durham Manor/ Oceana Medi- Spa aims to be the premier / Wellness Sanctuary in Pickering Durham Region Ontario. Through a unique combination of offered services and products, they will quickly regain lost market share due to the Covid 19 Pandemic. Durham Manor will provide customers with a relaxing, rejuvenating atmosphere where all of their mind and body needs can be met. Durham Manor offers a wide variety of mind and body healing services and products. The Oceana Medi Spa aspect of the business will provide both males and females with Botox /Filler restoration services. The spa business is devoted to providing holistic methods of massage, body work, weight loss yoga, energy work, professional naturopath and psychotherapy services. This is all done in a relaxing, serene setting. The heritage house can also be rented for micro weddings, a meeting and training room for up to 10 people for safe distancing.

Thursday, February 24, 2022 6:30pm - 8:30pm EST

Carion Fenn Foundation presents our Virtual Rare Disease Expo, Thursday February 24, 2022 6:30pm – 8:30pm Eastern in partnership with Ajax Legion and The Islamic Society of Ajax focusing on Chronic Disease Management and Rare Diseases. 

Whether helping local Veterans, supporting seniors, providing youth sports programs, raising funds, volunteering to help those in need, or simply offering a place to gather for fun and celebration, Legionnaires provide essential services in their communities. Legions help Canadians to honour and remember those that sacrificed for our Country. The Royal Canadian Legion Branch 322 Ajax Ontario was founded in 1942 by Veterans and for Veterans. Our Poppy Campaign, Remembrance Day ceremony, Youth Education, Vetbuild Program, Seniors activities and other community fundraising initiatives are some of the ways we help our community. Plan to join our Legion today, any citizen of Canada or an Allied nation is welcome. 

Registered Charity # 802775791RR0001

Together We Are Stronger®

Our Partners:

Tanis Russell is a Clinical Practice Leader, and a experienced Registered Nurse, skilled in Critical Care and Emergency Medicine. Tanis is passionate about the development of health policy initiatives , and facilitating nursing education for nurses at every stage of their career. Tanis values education and appreciates its impact on nursing practice, and its influence on patient care outcomes. Tanis is experienced in identifying, planning, implementing and evaluating educational strategies that influence nursing practice and facilitate the change required to meet the patient healthcare needs. Tanis has received a Master's degree in Nursing with a focus on Health Policy & Leadership in Education through Ryerson University, and is a proud inductee of the Sigma Theta Tau International Honor Society of Nursing. Tanis moved to Durham Region 11 years ago, and is passionate in serving the community.

​Tanis Russell

Registered Nurse

Sickle Cell: Do's & Don'ts - Mother & Daughter Story