Janet Hussey

Founder and Past President of the CCA. The First Chiari Charity in Canada. I was diagnosed with Chiari Malformation in March of 2011, after having symptoms for nearly 20 years. 

B.A. (ED), Memorial University of Newfoundland and Labrador. A retired elementary educator and ESL/ ESD itinerant teacher, from Toronto District School Board. She also taught Adult ESL with Continuing Education, Scarborough and North York Boards of Education. Her elementary  teaching career began in Corner Brook, Newfoundland. Upon retirement, she engaged in many voluntary organizations. She was VP of Competitions at Don Mills Camera Club. She received the Cora Bailey Award for Service from the Retired Women Teachers of Ontario, Scarborough Branch in April 2016. She served on the executive as Programme Co-Chair; and Photographer. A patient advocate for  pulmonary hypertension, pulmonary fibrosis, and scleroderma. She is interested in spreading awareness to her rare diseases, to help others recognize that early diagnosis provides a better quality of life. In April 2016, she received the Volunteer of the Day Award from PHA Toronto and PHA Canada, on Facebook, for her awareness and advocacy initiatives. She is a patient volunteer at Wightman-Berris Academy at UT and UHN, to help train our medical doctors of the future, with their clinical skills. Attitude is Altitude! Maintain a positive attitude when dealing with chronic conditions, while living with rare diseases. Keep educated with learning about the symptoms and treatments available. It's important to advocate for self and loved ones, with navigating our healthcare system. For more information about these rare diseases: 
Jeannie Tom: A Transformation

Experts & Patients Experts Panel Speakers

Sujeepa Tharmalingam is a Pharmacist at Shoppers Drug Mart in Ajax, ON. She has played an important role in helping patients manage their medications and improving their quality of life.  Her passion for providing the best possible care for her patients motivated her to embrace expanded scope of practice for pharmacists. She provides professional services such as Annual & Diabetes Medication reviews, prescription renewal, prescription adaptation, and provide recommendations to doctors on treatment plans for patients with complex medication regimen. Also, she has training and certification in smoking cessation counselling, administration of flu-shots and CPR/First Aid. She enjoys organizing health promotion clinics such as Diabetes, Heart Health, Travel Health, Arthritis, Pain management Clinics at the pharmacy. She is very passionate about the patient she works with and goes above and beyond for her patients to ensure she meets her patients' needs. She understands that patients' understanding of their medications is vital and thus, she takes her time to counsel patients taking into consideration age, disability, literacy level, language barriers, and cultural differences. She listens and solves her patients' concerns quickly and smoothly in a professional manner and thus, provides pleasant experience for patients she cares for on a daily basis.

Ask The Experts

Together We Are Stronger®

Merv M. Webb
Patient Expert

Detroit Michigan

Our expert panel is set up to offer the community an informative platform to hear from professionals, patients and businesses that are active, helping, and working to bring change in improving the lifes of our communities. This is an opportunity for the public to ask those questions, see what is happening, and get the experts opinions. Each expert will give a presentation, and take questions from audience members. This will be broadcast live around the world via Skype, download Skype and connect at: 

Sujeepa Tharmalingam B.Sc, Phm, Rph​
Shoppers Drug Mart
Ajax, On Canada

I have lived with juvenile idiopathic arthritis and psoriatic arthritis from the age of 3. I was diagnosed with Crohn’s disease at the age of 14, fibromyalgia at the age of 18, and chronic widespread pain syndrome in my early 20s. I also live with several atopic diseases. I’ve also witnessed my parents, in particular, my mother, live with several chronic health conditions, including lupus, polymyositis, osteoarthritis and osteoporosis. Having lived with these conditions for the majority of my life, and experienced the highs and lows of living with rare musculoskeletal diseases, I have been inspired to help other young people in similar situations. I have just completed my BSc (Hons) in Biomedical Sciences with Industrial/Professional Experience at The University of Manchester, where I was awarded a first class degree. I will begin my PhD at The University of Leeds in October 2016, where I hope to develop a tool to support children with long-term conditions to become competent in self-managing their health and wellbeing. My interest in research evolved from personal experience in research. I joined the National Institute for Health Research (NIHR) Clinical Research Network (CRN): Children/Arthritis Research UK Paediatric Rheumatology Clinical Studies Group as a consumer/young person’s representative in 2012, after finding out about the group from my former pediatric consultant rheumatologist. At the time, I had just started university, and was rather naïve about what research meant, and how people could get involved in shaping research. I am a member of the Patient Research Ambassador Initiative, as well as the youth representative with the European League Against Rheumatism’s youth group (EULAR Young PARE). I manage the communication channels for EULAR Young PARE, and I organise two youth-focused workshops every spring at their annual conference for patient organisations. In addition, I am a member of various stakeholder groups and strategic committees in the UK and Europe. I sit as a consumer representative and service-user researcher on a number of research projects, either as a co-applicant or study steering committee member.

Jeannie Tom

Pulmonary Hypertension

(Patient Expert) 
Toronto, On Canada​​

PH Awareness video

The Burden of Pulmonary


On February 17th 2012 I had brain decompression at Toronto Western Hospital. No longer able to work, raising awareness and advocating for others who have Chiari has been my passion. I run a large support group on Facebook with members worldwide. Having Chiari with its numerous symptoms can make you feel isolated and alone . Support from other members in the group is an important part of our  everyday struggle. Meeting others face to face with Chiari also has been what I have been able to do , by having educational meetings, lunches and awareness walks in Whitby where I have lived for 36 years . Community support has also been instrumental in bringing about awareness. With the help of Whitby This Week , Chiari has been featured several times . Purple is the awareness colour for Chiari. Global news aired The Purple Laces Chiari story . An awareness segment featuring my grandsons hockey team, who laced up with purple laces as a show of support . It can be found on YouTube under Whitby Hockey. Awareness , support and education about Chiari continues everyday . With the help of others who have Chiari , and to everyone who advocates for Chiari we will ensure that our voices are heard .

Family Wellness Practice. We provide a corrective style of chiropractic care. Most patients enter our office for relief of a symptom like back pain, neck pain, headaches, sciatica etc. Some enter for help with major conditions such as asthma, ADHD, asthma etc. Others come in for Wellness. We provide affordable wellness programs to allow our patients achieve their full health potential. I’ve personally experienced patients be transformed with the power of health! I have had the privilege to watch people regain quality of life that was believed to be long gone and unachievable. Now they can play with children and grandchildren again without the scare of flare-ups. I’ve witnessed children and adults that no longer need their medication for asthma or for their ADD or ADHD. I’ve seen others that suffered with chronic pain for decades and with chiropractic care they haven’t had a single episode. I know we all want a happy, financially stable purpose filled life but without health this is not possible. 

Simon Stones

Service-user researcher
​​Manchester, United Kingston​Website: https://simonstones.wordpress.com
Twitter: @SimonRStones

I was born May 1st 1984 in Detroit MI. One of my earliest memories was watching Casey Kasem show and imitating the host. While in Special Ed as a youth, I Place 2nd at our Science Fair. This was a little bit of a surprise for some; but those who knew me, knew of my potential. I served as an active member in the Ford Explorers Program; a Boy Scouts of America program concentrating on computers from 9th to 12th grade. While earning a spot on the National Honor Society; I participated in Track and Field. My events were the shot put and discus throw. Working hard to secure a spot on the football team in high school I didn’t play as much as I would have liked, so you could say I wasn’t Barry Sanders. The football team might not have been my strongest suit but the Academic Decathlon Team was. There I thrived doing my first speech contest. My team helped me write the speech that I presented; I came in 21st out of 65.  This gave me a hunger for public speaking. My Friday night lights were now replaced with a podium, a speech and the want to motivate. I had endured numerous life challenges including bullying, low self-esteem and depression. Aside of being an Engineering Technician for a local utility company in Michigan, my mission is to empower individuals to get through challenges by teaching them how to persevere and gain resiliency.  In 2008, I was diagnosed with Bells Palsy and Ramsey hunt syndrome, which caused permanent facial damage. During an MRI Scan I found out that I was diagnosed with Chiari Malformation. This inspired me to create the You Tube Channel: MervInspiresAll. A channel designed to empower individuals to never stop believing and to think positive.​​

Dr. Clay Kosinko

Health First Family Chiropractic
​​Ajax, ON Canada​

Ajax Community Centre 
HMS Room

75 Centennial Road Ajax, ON L1S 4S4
​Carion Fenn Foundation
​www.rarediseaseexpo.com www.carionfenn.org