Outrunners are the heart and soul of our awareness campaign
My name is Jerry and I have a rare disease called Gardners Syndrome. Very little is known about this disorder. In many cases, the life expectancy ranges from 35-45. My Dad was diagnosed at 32 after many missed diagnoses. I was 13. He lost his battle to cancer just shy of 34.
I was diagnosed with Gardners Syndrome and had my first of two major surgeries – a colonostmy bag for a year in Junior High followed by a reversal surgery to get a j-pouch. Gardner Synrdome has impacted my life in so many ways: a very limited diet, many trips daily to the washroom (including at night), and yearly to bi yearly procedures.
I face an uncertain future yet I have never been more excited about what’s next. 7 years ago my first son was born. Now, with our new addition I have two boys and a baby girl. They all will likely develop the same disorder. So, in 2014 I decided to do something to show them that they can do anything. I entered my first 10k race. Yup, I could barely run back then. Soon after, I started running marathons and qualified for Boston.
Knowing I needed to dream bigger and show them that anything really is possible, I entered my first ultra. Since then, I have run many ultras (from 100k to 24hr races) qualified for the Canadian National team and won the 100k championships.
My drive is raising awareness and having a voice for those who don’t. I am so excited that Dave decided to create this amazing opportunity for others to spread love, awareness and build community not just in Canada but around the world. Rare matters, there is hope and we can achieve amazing things. My life’s mission is get funding for all rare diseases. Let’s show just how loud Outrunners can be!
I am deeply honoured to be an ambassador for Outrun Rare. In the time I have known Dave and his team, I have been in complete awe of his dedication to the cause. Dave is simply an inspiring individual so it was without hesitation that I would commit myself to his energy for rare disease awareness.
As a member of the media, I have a firm belief that my privileged voice in the community should be used for positive leadership and advocacy. I have always dedicated myself to raising the voices of some of our most discriminated community groups. To me, advocacy is about collaboration. I hope to bring this collaborative spirit to the Outrun Rare cause in 2019 and beyond.
I love any challenge, whether running for miles on end or patiently guiding my own children to become better citizens as they grow older. Outrun Rare exemplifies facing challenges ahead and I am all in
Hi everyone! My name is Jillian and I currently live in in Truro, Nova Scotia with my boyfriend, our 2 cats, Oscar and Burt, and our dog, GP. By day, I’m a Fisheries Biologist and by night, I’m a fitness enthusiast who absolutely loves running. I enjoy spending my time outdoors running, hiking, camping, fishing and adventuring.
I love being an Outrunner because it’s going to bring more awareness to Rare Disease. It is not talked about enough and there are not nearly enough resources to help those who are suffering. Rare Disease hits close to home for me because one of my close friends’ family is greatly impacted by it. After years, they still don’t have answers. Seeing their strength, the sacrifices the entire family has made, and the constant worry with not knowing what is wrong, motivates me. I know they are not the only family in this situation so it’s time to change that.
My name is Nick Brindisi and I’m a lifelong runner. From age 10 until my present 56 years, running has always been part of my life. I currently enjoy ultra trail running the most. I have always believed that running can be a catalyst for change and have attached fundraising for a cause to my races and some solo runs whenever possible. Most recently I’ve run to raise funds for our local hospital, our shelter for abused women and children, and other causes. As a coach of Special Olympic ski racing, I coach the world champion slalom skier who has a rare genetic condition called Fragile X Syndrome. With athletes like this in my life to inspire me as well as people like Dave Proctor who is willing to run across the country for rare disease research I know Outrun Rare is something I need to be part of.
My name is Kristin and I live in the U.S., right outside of Washington, DC. I am an accomplished marathon runner and also a patient living with a rare metabolic disorder called Homocystinuria (HCU). I am one of the founders of HCU Network America and currently serve as their Vice President. I have been involved with the Running for Rare Disease Team in the U.S. and have been one of the team’s top fundraisers for the National Organization of Rare Diseases. I’m a passionate advocate for rare diseases and is excited to bring a unique perspective to the Outrunner team as both a runner and a rare disease patient.
Hi, my name is Ross McCreery and I live in Regina, Saskatchewan. I’m a married father of two amazing daughters, and an advocate for rare disease. I was diagnosed with a rare chronic pain condition called Complex Regional Pain Syndrome. There is no known cure for this disease and very few treatments for the debilitating pain of which I suffer every day. I am the founder of CRPS Awareness Day in Saskatchewan which is an initiative designed to educate and raise awareness for the disease. I am excited to be an Outrunner Ambassador as I want to show others that you don’t have to let rare disease define who you are or what you can do.
I was born and raised in Winnipeg, Manitoba. I ran my first full marathon at the age of 16, and have been participating in endurance sports for nearly 25 years. I’m an active member of Manitoba’s trail running community, and have had the chance to participate in some great events over the years, including the Barkley Marathons and most recently, Big’s Backyard Ultra. My partner and I share 5 children, including my son Nick. Nick was born with a rare neurological condition called Polymicrogyria. As a result, he is non-verbal, g-tube fed, and deals with recurring seizures and motor delays. More importantly, he’s an outgoing, happy, affectionate 7 year-old that’s full of life. I’m honoured to be an Outrunner, and have the opportunity to bring awareness to the challenges faced by people with rare diseases and their families.
I live in Calgary, Alberta with my spouse of close to 9 years. When working, I am a booking agent, relief dispatcher and log book auditor for Chariot Express, a local freight company in Calgary with intention of becoming a transportation safety consultant in the next twenty four months. When not at work, I keep busy doing volunteer work with the Alberta Wrestling Officials’ Association and the Calgary Police Service Half Marathon. I’m active in provincial politics, serve as a teacher in my church’s Sunday School program and help oversee all teaching done in my congregation. I am also very excited to be an Outrunner Ambassador, having been inspired by Dave’s story to not only better myself physically, but to be proactive in lending my voice to bring awareness to rare diseases through engagement online and in public. Bringing awareness to persons with disabilities and rare diseases is not a new thing for me, as I knows friends who live with Rare Diseases and my spouse was diagnosed in 2018 with Relapsing-Remitting Multiple Sclerosis. These and other instances have shifted my paradigm to understand that everyone has a responsibility to lend a hand in uplifting those living with these conditions and to be motivated in teaching society that Rare is indeed everywhere and can affect any of us at any time. I am excited to share the Outrun Rare message as I improve my own physical wellness and I’m very excited to be part of the Inaugural Backyard Ultra Event in June. Finally, when not being part of the community and choosing to be a hermit, you’ll find me relaxing with a good book, a fun game, listening to instrumental music or a great musical, learning something new and when time permits, tuning out the world in a float tank. And frankly, if I could own a float tank of my own, I’d be there for hours.
Five years ago I turned to running to deal with stress and anxiety like so many do. I never considered it could be a lifestyle until I read the book Born To Run and met a local natural runner who believed that less is more and ran mostly in sandals. I now run most of the time in sandals and train for Ultras and long trail distance. Running for me is the source of so much good in my life and I want others who are searching to know what it can do for them also. I feel the same way about rare disease (which hits close to home) and care about what Outrun Rare is doing to bring attention to the issue. I live near Calgary with my family and split my free time between running and commercial photography.
My name is Kristi Hall-Busque. In my professional life, I’m an Emotional Behavioural Specialist for the Edmonton Catholic School District and in my real life, I’m a busy mama to three beautiful children (16-year-old step-daughter, Avery, 10-year-old Benjamin and 8-year-old Poppy).
The Rare Disease Foundation has been a part of our lives since 2009 when our son Ben was diagnosed with PontoCerebellar Hypoplasia Type III; he is one of six individuals officially diagnosed with his type in the world. Awareness and advocacy has always been of huge importance to me and last year, the chance to combine awareness and self-care came knocking. While I’ve been into athletics my whole life, running was definitely not a part of that until last summer. I needed a way to breathe and sort through my feelings and stresses that didn’t take me away from my family for too long so I started running. Caregiver burnout (parental burnout!) is legit and finding coping strategies and relief is necessary.
August 2018, our family joined the Edmonton Outrun Rare Fun Run event and I pledged an additional 100 kms of running to raise awareness through Outrun Rare. I’m still not sure what I was thinking at the time!
Since August I’ve continued running; being an Outrunner Ambassador allows me the opportunity to spread love, education and support our rare community in a new way. I’m excited to put on some orange and be a part of Dave’s journey!
My name is Jessica McBride and I am an Albertan marathon and ultramarathon runner. I came into the sport off the back of being morbidly obese for many years and took my life back through running. I originally became aware of ultramarathoning as a concept after seeing Dave win the Calgary 150, and life has never been the same. In many ways Dave has indirectly shaped the kind of runner I am today, and I am very grateful for that.
I am truly blessed to have a body that will carry me long distances and a mind that won’t accept less than everything. When I became interested in competitive running I knew I wanted to lend those gifts to others in whatever way I could. I’ve certified in run coaching and nutrition to give back to the run community directly, but aligning with causes that resonate with me is so important at this stage in life. When I learned about Outrun Rare, after having lost my Aunt Liz to MSA in 2016, it spoke to me in a real way. As Canadians we are always better together and I am so proud to join the Outrunners in support of the Rare Disease Foundation.
I was born in Malta, Europe and I ran there from 13 to 19 years old. I emigrated to the UK in 1969 at which time I stopped running altogether. Then in 1972 I moved to Canada and settled in Ontario until 2013 after which I moved to Victoria, British Columbia.
In 2010, I had vacationed in Victoria, where on a chance visit to the Terry Fox monument at Mile 0; I was inspired to start running again at sixty years old and after over a forty year absence from running. I have participated in the annual Terry Fox Run since then. I am most proud that in 2015 I went on vacation to Malta and I organized the first and only Terry Fox Run to be held there.
Running has been a true blessing for me and I am most grateful when I have the opportunity of helping others start on their journey not only for a better healthy lifestyle but also and especially to assist those who might be less fortunate due to some illness or other handicaps.
I would be more than honoured to help the Outrun Rare family in their journey.
I have always enjoyed the outdoors and what it has to offer. That being said, I have taken for granted my ability to simply get up and move around with no issue. When I started to listen/read what Dave Proctor was doing my eyes were opened to a whole new world of struggle and triumph. I had no idea that there were so many affected youth and adults in our society that are diagnosed or awaiting diagnosis of rare diseases with even smaller chances of effective treatments being available.
I have greatly admired what is being done and would offer support in the only way I know how, and that is through word of mouth, social media, and action through my running efforts.
I retired from Scotiabank in 2010, and have been a runner since I was 43 years old. I will be 69 years old in April. I am retiring as secretary of our running club soon, but will still be involved with the club and our weekly training sessions. I am also a volunteer at the CFB Esquimalt Navy Museum. I became an “unofficial” outrunner last year after having the privilege of meeting and talking with Dave Proctor in Victoria, BC. On the following day when he started his run across Canada I started running 9 km a day. I ran for 33 days and raised $260 through myself, family, and friends, and I had fun doing it. Stephanie and Dave were very supportive. I admire Dave for his dedication to his family, and Outrun Rare. It is an honour to become an official Outrunner. Thank you for considering me as an ambassador.