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

Charity #: 802775791RR0001

syringomyelia, Chiari  Malformation & Rare Diseases

Diana MacDonald, Coordinator
Central East LHIN

Selp-Management Program 


Central East Community Care Access Centre
(Durham East) Whitby Branch

Rare Disease Expo

Frank Kennedy is a professional Social Worker & Counselor spans some 35 years in Mentoring and Counselor Supervisor. Frank is experience working in trauma, abuse, grief counselling, various forms of vistimization, family dynamics, child protection, conflict resolution, emotional regulation and marital is sues affecting a wide range of cultures and socio-economic classes. Kennedy's Intervention Services. 

Counselling

Simon Stones is a doctoral researcher in child and family health at the University of Leeds, where is research interests include self-management of long-term, chronic health conditions by children and their families, digital health tools and musculoskeletal health. He graduated from The University of Manchester with a first class BSc (Hons) in Biomedical Sciences with Industrial/Professional Experience in 2016. Simon is also a consumer health advocate and health activist, where he advises national research bodies in the UK on their paediatric and young adult rheumatology research agendas. In addition, he sits on numerous strategic and advisory panels for health and social care initiatives in the UK and Europe, including the development of mobile app technology to promote self-management and using multimedia platforms as an alternative to written participant information sheets for research. Simon has been invited to participate in a number of international conferences, and has co-authored a series of publications related to rheumatology and patient and public involvement in research. Furthermore, he is a member of the EULAR Young PARE working group and is a trustee of Fibromyalgia Action UK. His involvement in research has been inspired by his own experience of living with childhood-onset arthritis, fibromyalgia and inflammatory bowel disease.

Dr. Sandra Miranda, ND
Naturapathic Doctor


Miranda Naturapathic Clinic

Rare Disease Expo &

Support Group Meetings

Dion is a Nurse at NBIMC, Child Advocacy Center and Pediatric Nurse-Child Abuse. RDTC at Newark Beth Israel Medical Center and Children's Hospital of New Jersey. Studied Nursing at Center for Allied Health. She also studied at Jersey College and St. Catherine High. 

Dion Barnes
Nurse

New Jersey, USA

Remi Kowalski
"The  Last  Minute" 

Video-Photo-Audio-Lighting
Production & Services

Videographer

Dr. Miranda, ND is one of Durham’s leading Naturopathic Doctors and founder of Miranda Naturopathic Clinic. She received her medical training and Doctorate in Naturopathic Medicine in the year 2000 from the Canadian College of Naturopathic Medicine. Her passion for promoting wellness and integrative medicine inspires her patients to make positive changes in their lifestyles and nutrition to achieve optimal health. Dr. Miranda, ND provides a thorough approach to her evaluation and her treatment plans are very personalized. She enjoys working with families and being an essential part of their team of health care providers. Dr. Miranda, ND has a special interest and experience in treating hormonal imbalances, thyroid deficiencies, weight loss, detoxification, fatigue and stress management, digestive complaints, and pain management. In addition, she regularly contributes to Rogers TV as a natural health care expert.
She strives to create a professional, safe and nurturing environment at the clinic where practitioners and therapists can work together to find answers to their health concerns. Dr. Miranda, ND is pleased to be part of “Rare Disease Health & Wellness Expo”  and looks forward to meeting attendees during her workshop. 


Diana MacDonald is a Coordinator in the Central East LHIN Self-Management program. For the past four years she has been part of the Self-Management Team that delivers 80 Living a Healthy Life Workshops across the Central East LHIN.

Diana is also a facilitator for a new Program being piloted in the Central East LHIN called Powerful Tools for Caregivers. During this pilot Diana has facilitated four, six week series workshops that are dedicated to supporting the health of the caregiver. she recently received a Master Training Certificate in the Powerful Tools for Caregiver Program and looks forward to having the opportunity to expand this program to reach all individuals who find they are struggling in their caregiver role.

Expert Advisors:

Daniel Fenwick, Lawyer
Brauti Thorning Zibarras LLP

​​
​Email: dfenwick@btzlaw.ca

​Rare Disease Expo

Simon Stones, BSC (Hons) AMRSB
Service-user researcher

​​Manchester, United Kingston​

https://simonstones.wordpress.com
Twitter: @SimonRStones

Rare Disease Expo; Support Group Meeting Presenter & Foundation Research Advisor

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.

Frank Kennedy

Counselor


KISI Intervention Counselling

On Canada

​Support Group Meeetings

Daniel Fenwick is an associate who practices primarily in the area of civil litigation focusing on personal injury claims. Before starting with Brauti Thorning Zibarras LLP Daniel's practice was focused on insurance defence litigation. As a former insurance defence counsel Daniel has a unique and intimate knowledge of how insurance companies evaluate and compensate claims, allowing him to provide unique and knowledgeable advocacy for his clients. Daniel's practice covers all areas of personal injury litigation including motor vehicle accident claims, disability claims, occupier's liability claims, product liability claims and accident benefit claims.

Sujeepa Tharmalingam 
B.Sc, Phm, Rph​
Pharmacist​


Shoppers Drug Mart
Ajax, On Canada

Rare Disease Expo