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.
I am a Vice Principal of a Junior High School who likes to run in my spare time! I like running a combination of road and trail, fueled by my favourite motto “Carpe Diem”, and I always enjoy running in support of various causes, such at Outrun Rare. Running serves as a reminder to me that no matter what life throws at me, I can still run, while there are so many people in the world that can’t, and that anything in life is possible with hard work and passion. I am excited to be chosen as at Outrunner and look forward to spreading awareness of rare diseases through my love of running.
Greetings, my name is Regan Richards and I live in Edmonton, AB. I am a husband, father and endurance athlete. With running and my day job as a postal worker I certainly log a lot of steps each day. In fact, I have traveled a distance greater than coast to coast yearly for the past decade! I enjoy the challenge of taking on ultra marathons, Spartans and even Ironman races. 1 in 12 Canadians are affected by rare disease and I believe we need to create a movement of awareness, education and funding so that they are no longer left behind. It’s truly an honor to be an Outrunner ambassador!
Hi all, Heidi from Sasky here:) I am a ultra runner running out of Lumsden, SK, which is a small town near Regina in the Qu’appelle river valley. I love to run all distances, but the 100 miler is my favorite, as I love to see the new day come around again while running. Highlights of last season included qualifying for Western States at the canyons endurance runs in Cali on the Western States trail and spending time in Auburn with my coach Ann, organizing the Outrun Rare Regina fun run with Jon and Marsha, organizing children’s medals and speaking at the Run the Fin trail race, running on the Boreal Trail in northern Sask (FKT goal for 2020!), completing the Skyline Trail in Jasper, and having a strong 100 miler at Lost Souls in Lethbridge. Outrun rare has a personal component for me, as my mother (a distance runner in her day) has recently been diagnosed with a rare mitochondrial disease affecting several body systems after suffering with no formal diagnosis for almost two decades. She has always inspired me in my athletics and in life, and I will always run for her. Rare disease touches so many people, and in so many various ways, that I think many feel alone in their health challenges. Outrun Rare demonstrates the solidarity of those dealing with these challenges, and shows us that we are not alone.
Over ten years ago I was diagnosed with Sarcoidosis. I had been sick for over a month and ended up going to the hospital. Sarcoidosis was once considered a rare disease, and sometimes still is, though it is more common than originally thought. I was diagnosed quickly. As far as the incurable disease spectrum goes, I couldn’t help but count myself as lucky, as things could have been a lot worse. I imagine what it would have been like to have suffered though disease for a long time, waiting for a diagnosis and treatment. Since then I have tried to live with a purpose of contributing. Both to our knowledge of the world through being an explorer and helping others as a volunteer. I explored the world’s largest network of volcanic steam caves and helped confirm the deepest cave in Canada. I also took up ultrarunning.
Fast forward to a couple of years ago, I was two-thirds though finishing my first 100 miler. Out of nowhere, this guy comes through and laps me. It was Dave Proctor, setting the course record. I finished many hours later and by chance enough other people had dropped out of the race that I shared a podium with Dave. It was then that he announced Outrun Rare. I knew right away that he was onto something. I know I probably won’t ever share a podium with Dave again, but I do know that the fight to just finish these runs is important to me. As is the fight against rare disease. I hope that by being an Outrunner Ambassador that I can help show others the importance of this fight and that everyone can contribute to make our world better.
I’m Sharon and originally from Norwich, England. I moved to Alberta in 2006 and am lucky to call Millarville in the Foothills home (got to love those hills when running!) I love running on the roads of Millarville and Priddis, as well as the riverfront paths downtown, where I work for a Private Equity company.
I love being able to use something I love doing (running) to raise awareness of Outrun Rare. I’ve had people stop me in England while wearing the shirt, asking about the cause and Dave’s run around Canada in 2018. By the way – the English thought you were a mix of crazy and amazing Dave!
It’s so easy to raise awareness and importance of Outrun Rare around the globe just by putting on a shirt and heading out for a run. The Outrun Rare community is so inclusive, a family that we all belong to and I’m honoured to be involved.
I’m Paige and most of my friends would introduce me as, “The one who has eight kids…” My kids range in age from 22 down to 5. I’m still homeschooling the two littlest and teaching music part time while enjoying my first grandson who will be one in June! I started running as an outlet for the emotion of raising our big family and was subsequently drawn to Outrun Rare because it resonated with me so deeply as a mother. I had watched my sister agonize through the horrific drawn out process to diagnosis her daughter’s rare disease and it was so easy to cheer for Dave as he championed and brought together the force of families affected by being a part of the “1 in 12”. I’m excited to race in orange this year and I’m excited for all the upcoming events that will serve to raise awareness and take away the isolation that so many have felt up to this point!
Hi! I’m Kerri! Wife to Jacob for 22 years, Mother to Cam 21 and Bren 19, Ultra Runner, Massage Therapist, Instructor of Massage Therapy and a simple city girl with an adventurer’s heart. I love the outdoors, camping, mountains, the crackle of a fire, cozy stuff and the color purple. I’ve been blessed with good health in my life and am grateful that I have not been affected personally by any disease. I’ve only known others who have. The opportunity and honor to be selected as an ambassador will give me the chance to learn about other people’s journey’s and develop awareness, empathy and compassion for rare disease. I think it’s important to always embrace learning about the unique world of other people’s lives and to be a part of a community that supports one another. I have much more to learn in life so this is another exciting opportunity for me.
My name is Saskia de Jong. I am a triathlete, trail runner, and soon to be ultra runner. By day I am a student working towards a career in medicine. I also work as a swim coach/lifeguard and as an assistant at a local veterinary clinic. While being a student and working full time is busy, endurance sports are my outlet and where I can both relax and think! I would like to take this opportunity to say that I am honoured to work with Team Outrun Rare and the Rare Disease Foundation as an Outrunner. What I enjoy about being an Outrunner is being able to help raise awareness about rare diseases. With more than 7000 named/diagnosed conditions and many more that are unnamed, rare disease effect 1 out of every 12 people. Many conditions are severe and/or chronic and are also degenerative. Being rare, as their name suggests, however often makes diagnosing such conditions extremely difficult; often times this leaving individuals and families struggling with many unanswered questions and symptomatic treatment solutions that may not be effective in treating their condition(s) as a whole. As a scientist by trade and with a keen interest in medicine, I believe it is important that we both learn more to understand and characterize rare diseases (and potential links between them), how to better diagnose them, but to also help support those within our communities who suffer from such conditions.
Hi! I’m Sonya Jongsma Knauss, and I live and run in Edmonton, Alberta. I moved here with my husband and four daughters in 2016, and the Edmonton River Valley opened up a whole new world of running to me. I work in communications for the City of Edmonton, lead a weekly speed-work crew called Need For Speed, and I love to spread joy and goodwill through running. It’s my favourite way to raise funds and awareness for issues I care about. I met Dave Proctor when I ran with him briefly at the Canmore Grizzly 50K in 2017, and that was when I learned about his passion and purpose in raising funds for rare disease. Several people I care about deeply are affected by rare or little-known diseases, including my husband, who has a neuropathy called CMT. I love being an Outrunner because I can do something I love while also raising awareness of diseases affecting people I love.
My name is Coral Wiebe and I am an ultra-runner, adventure seeker and all around costume wearing enthusiast who is a proud owner of at least a dozen onesies and tutus.
I am a single parent to three pretty amazing and wonderful kids and I also belong to an incredible trail family here in Edmonton, Alberta. I love to go on adventures in our local and surrounding trails throughout Alberta and British Columbia to run in and experience the amazing rush of running through incredible mountainous and prairie terrain! Western Canada boasts amazing races!! This summer in 2019 is extra special because I am going for my first 100km and possibly even my first 100 miler!
I love being an Outrunner not only because of the awareness it brings to the rare disease community, because it embraces family, kindness and adventure in a way that I truly connect to.
Twitter : @CoralPeaker5
Hi there! I’m Samuel Yamamoto, also known as Sam Yam on the trails, and I’m thrilled to be an Outrunner with Outrun Rare! I am a passionate teacher, music educator, musician, family man, outdoor enthusiast, and trail runner.
I’m thrilled to be an Outrunner because I know what a powerful force running can be in the lives of individuals and also our society and world. Terry Fox and his Marathon of Hope first inspired me to put running a marathon on my bucket list and as a non-runner at the time, that was a daunting feat for me. But that goal changed my life and helped me achieve other running milestones. Being an Outrunner is my way of giving back and furthering a cause that will give many others hope and many more awareness that Rare Diseases affect so many lives.
Instagram : @samtheyam
Twitter : @samtheyam
Hi my name is Ally I am a play enthusiast. Growing up my two close friends had muscular dystrophy and cerebral palsy they had such physical limitations yet that did not hold them back in participating fully in life. This has a profound impact on me coupled with a athleticism in almost every sport with the exception of ballet and pole vaulting and high success in many arenas until it all came to a crashing halt literally when I was 16 years old. In bike vs car accident and a prognosis I would not walk “normal” or be active again. The trajectory of my whole life changed and Fast forward to now with marathons, ultras, Ironmans, world championship teams and a recent cross Canada bike ride normal didn’t play into at all. What did was a passion and career in nutrition and the bodies healing capacity. I also dedicate whatever I could offer to those that couldn’t play whether held back by physical, financial or gender /cultural. Add to that my Mom’s daily struggles with a rare late diagnosed form of MS brings us to Rare … not sure I can outrun anything but will outplay as much as needed to Ambassador the Rare cause, research and awareness.
Instagram : @masteryofplay
My name is Rob and I live with a rare bone condition called Multiple Hereditary Exostoses. The condition limits my physical range of motion and flexibility. There are limited treatment options available for me. Eleven years ago, I had a significant hip surgery to alleviate discomfort and pain from the condition. Thankfully, my bone condition is diagnosed as benign. I work as a Financial Advisor, and I am a fitness enthusiast who loves running and road cycling. I’ve been fortunate to be a runner for 20+ years, and run distances from 5km to marathons. I am very excited to be an Outrunner Ambassador as I’m very inspired by Dave’s initiative, and I want to help by proactively raising awareness of rare diseases and sharing the Outrun Rare message. It is important to me to raise awareness of the challenges confronted by people (and their families) with rare diseases. I am also looking forward to running in the Outrun Rare Backyard Ultra in June.
My name is Heather Stirling and I live in Edmonton, AB. I started running in 2016, at the age of 33, when some friends asked me to be on their relay team for the Canadian Death Race, and I haven’t stopped since. I’ve discovered that I love facing the mental and physical challenges that come with running, and that there is truly no limit to the goals we can set for ourselves. Running has changed my life in so many positive ways, and I believe that running can be used as a way to inspire others and facilitate positive change in the world. When I first heard about Outrun Rare in 2018, I was so inspired by Dave’s dedication to raising awareness of rare diseases, and I knew right away that I wanted to help in any way I could. I am truly honoured to be an ambassador for Outrun Rare, and I love being an Outrunner because I get to help support and advocate for people and families affected by rare disease, raise awareness, and help raise funds for very important and necessary rare disease research. Thank you so much!
Instagram : @hms_sophia
It took me a while to find the best profile pic to introduce myself as an out runner. That long haired beauty in the back is the one and only Dave Proctor. I have known Dave for sometime, when running was secondary to only his family. He was unstoppable back then and continues to have the same determination today. My family as well as too many others have been touched by rare disease. I am pleased beyond words to be able to help Dave bring awareness to this fine cause. Here is to standing up for those with rare!
Instagram : @hubs2791
Twitter : @johnnyhubs
I’m Heather Johansen, a mom, wife, runner and Newfoundlander living in Calgary. I am the owner/operator of Hot Mama Health and Fitness Calgary SE, offering group fitness classes and run groups for Moms. I have been running for 10 years but found my true passion and meaning for the sport after becoming a mom 4 years ago. My running mantra is “I run because I can”, realizing that not everyone is fortunate enough to do so.
Instagram : @hmhf_secalgary
My name is Rebecca Wakeman. I have been an avid runner for 10 years now! I was inspired by Dave when I met him to train before the confederation 150k race! He is inspiring and so committed, it’s contagious! I can’t wait to be a part of the outrun community! So many wonderful and amazing people! What a wonderful race season we have ahead of us!
Instagram : @Becca1lydia2frankie3
Hello everyone, I am very excited for this opportunity to join Outrun Rare as an Outrunner. My name is Michael Giebler and I am from Calgary Alberta. My primary sport is obstacle course racing but I also love trail running, hiking, and health & fitness.
The main reason I am excited to join Outrun Rare is because of my wife, Johanna, and walking with her on her journey of having a rare disease and living with chronic pain. I am very excited to be on a team that promotes athleticism while helps bring awareness to rare diseases.
Instagram : @Michael_mongoose
My name is Michelle Chisholm and I live in Okotoks, Alberta, hailing originally from Nova Scotia. I am a teacher and an avid runner, who trains regularly for half, full and ultra marathon distances. I have been fortunate to have met the most amazing people through running, including Dave himself, and consider those in my running circle to be my best friends and second family. I have also gotten to know Dave’s son Sam, a very funny, resilient, kind hearted and intelligent boy living with a Rare Disease. As an ambassador for Outrun Rare I get to bring awareness to such a worthy cause, all the while continuing to run. That’s a win-win! I also look forward to helping Dave and his team with all the exciting events they are planning.
I’m Tess Owen hailing from Edmonton AB! I began my love of the trails and the river valley system collecting dinosaur bones and birdwatching with my Dad. I’m still a nerd now in my 30’s, but the need for speed on the trails increased after a friend twisted my rubber arm into completing the Spartan Trifecta in 2016. In 2018 I ran my first few 50 km ultra-marathons and got hooked! I’m now kicking my own butt training for the Sinister Triple series in 2019. When not offering fun facts to my running buddies and chasing my dog Carmen on the single tracks I raise my two daughters, Scarlett (8) and Poppy (6), and I’m an Elementary French and Music teacher for Edmonton Public Schools. I have an awesome ’89 ragtop truck and might even let you control the cassette deck if you come for a ride!
Instagram : @tessa.rex
My name is Brandon Regier and I am a young and aspiring Athlete from northern Alberta. I started running about 7-years ago, and will be going into my fourth season in the Ultra scene. Running (and fitness) has become a lifestyle for me, it is a passion and a priority; everything from the healthy lifestyle choices to that release you get by hitting the trails, I come alive and nothing else matters but the moment I am in. I find myself pushing my limits to places I never thought I could, one step at a time while never giving up, simply perceiving.
I am currently completing my undergraduate degree in environmental science, majoring in fish and wildlife and will be graduating this April with plans of attaining a biologist position. With a busy schedule, the ability to train, recover and live a healthy lifestyle is dependent on proper balance and time management, this being the key to my success!
The mission of raising awareness through Outrun Rare for the needs and struggles of the rare disease community as a group of passionate athletes truly creates a special team. The ability to share the mission of Outrun Rare while doing my favourite thing: running, is a true gift. Stoked to be part of the team and make a difference one step at a time! #outrunrare #1in12 #rareiseverywhere #rarematters
Instagram : @Brandon_Regier
Hello, I’m Shawna Lynn. I live in Kenora, Ontario. I have two teenage children and work as a legal assistant.
I started my journey in running 4 years ago shortly after being diagnosed with an Autoimmune Immune Disease. It was one of the many activities I tried in my quest to get my health back. I fell in love with running and even more so with trail running. You will often find me running the trails amongst the tall trees surrounded by nature, it is where I feel most alive and at peace. I also enjoy cycling, mountain biking, crossfit, long hikes through the woods and downhill skiing in my spare time.
About a year ago I was paired up with my running buddy Max through the I Run for Michael foundation. Max has a rare disease, Cri Du Chat Syndrome. I run for Max, I run for my children, I run for myself….running for those who can’t.
My motto is Run Happy Always.
Instagram : @gobo07
I am a 43-year old running Dad and writer with a passion for the sport of running and for helping others. I have been running since the age of 12 and have run everything from the 100m to 100km ultramarathons. I have run for childhood cancer, I have helped others do good on foot for good causes and was inspired by Dave’s story and his cause. I want to help others through my running and my writing.
I am a former Air Force Captain, have written for Canadian Running magazine and iRun magazine, have a podcast, a blog and a decent social media following. I have a young daughter and live and run in Ottawa, ON. I just love to run and my favourite place is a long run on a long winding trail.
Instagram : @runningwriter
Twitter : @noelpaine
I’m Stephanie from Quebec City. I’m Sarah’s mom and caregiver as she lives with a rare disease called Phelan-McDermid Syndrome. She’s non-verbal but can clearly show how she loves stroller rides so I walk/run while pushing her. I know firsthand how important it is to stay healthy when you are a caregiver so I will use my role as an Outrunner ambassador as a discipline to make sure I go out often and stay in shape!
French: Je suis Stéphanie, de la Ville de Québec. Je suis la mère de Sarah et sa proche aidante puisqu’elle vit avec une maladie rare nommée Syndrome Phelan-McDermid. Elle ne parle pas mais peut nous montrer très clairement à quel point elle adore les tours de poussette alors je marche/cours en la poussant. À titre de proche aidante, je sais très bien à quel point il est important de rester en santé alors je vais utiliser mon role d’ambassadrice du programme Outrunner comme discipline pour être sûre d’aller souvent dehors et de rester en forme!
Twitter : @sleclerc
I am super excited to have the opportunity to help Dave and Outrun Rare make a positive impact on many Canadians who are in desperate need of support from the community. You used to be able to find me sharing the trails and roads with Dave and the Calgary running community, but now you can find me exploring the trails in the Okanagan Valley! I am currently undertaking a PhD in civil engineering at UBC Okanagan in Kelowna, BC. I’m also an advocate for mental health awareness and write a blog (www.runningonthoughts.com) combining my interests of running ultras and spreading messages about mental health. You can expect some interesting and informative posts about this initiative and my involvement, including my training leading up to the best race of 2019, the Outrun Backyard Ultra! I’m looking forward to continuing my support for this incredibly worthwhile cause – it’s about time to make waves in Canada for Rare Disease awareness!
Instagram : @running.on.thoughts
Hello ! My name is Jordan Stewart and I am a Spartan Athlete and amateur runner from Melville, Saskatchewan . Over the past 3 years I have competed in Spartan Races and road races of all lengths all across North America, including an 1100 km bike ride from Banff, Ab to Melville, Sk to raise money for cancer research with the Terry Fox Foundation. I look forward for the opportunity to spread the Outrun Rare message across the world.
Instagram : @Jordan841
My name is Adam Levine, I am from Bristol, Connecticut, USA. For those of who do not know, Connecticut is about a 2 hour drive between New York City and Boston. I am married to a wonderful wife for the past four years and we have to beautiful girls, a 3 1/2 year old (Caroline) and a just over one year old (Grace). Grace hasn’t had the easiest start to life. She was diagnosed with a partial deletion, more in particular 11 p15.4, and she had severe anemia at birth that required a blood transfusion when only a few weeks old. This deletion has also caused an array of other issues throughout her life, like motor skills issues, which we work with a program called Birth to Three which works with her 1-2 times a week, helping her crawl, move and walk, (we have mastered crawling now we are trying to get her to walk). Grace also had two small holes in her heart and it took the first year of her life to finally close near completion. We as parents, my wife and I, were so proactive in Grace’s life right from the start trying to help her in whatever we could do – endless doctors visits, consultations, blood work, specialists in Connecticut and NYC. Grace has truly been a fighter and keeps hitting milestones.
I work as a Registered Respiratory Therapist at a Trauma hospital located in Hartford, Connecticut called Hartford Hospital.
A long time ago someone told me we only have 1 chance in this life-time. No do-overs; no dress-rehearsals. Make it your best!
So when I was following my friend, Dave, on his journey last year to spread awareness (in the hopes of finding cures) for Outrun Rare I was so moved by what he’s done & is continuing to do. Dave is an amazing runner & he has channelled his athletic strength for a worthy cause. I am in awe of his work in this cause.
So in making my life the best I want to leave a mark. I want to have a meaningful life. I want to use my passion in running towards advocating and creating awareness and funds for families affected by Rare Disease.
I want to make my time left here interesting. I want to make it count and if it means that I can help these families, then I know I have done my part!
I am a working mom of two teenage kids that have the drive the size of Mount St. Helen. I have the will and the drive to do well in everything from work to my achieving my running goals. I have been running for nearly 30 years now. And instead of being self-serving, I want to use my passion in sports to give back; give back to the community for a very good cause. I want to join my friend Dave in helping those who are affected by Rare Diseases.
Instagram : @chanlauzier
Hello friends! My name is Keeley Milne and I make my home in Medicine Hat, Alberta. I am a yoga instructor, a project coordinator, a soon-to-be student pursuing my Master’s degree, and a mom, dog-mom and wife in a busy house.
I am also a passionate runner and advocate. Last year my entire family began to follow Dave’s journey day by day. My admiration for Outrun Rare and those involved grew with every step Dave took and with everything I learned about Rare Diseases. I ran my first ultra-marathon last summer, absolutely fell in love with the sport and ended up in pursuit of more! I am now honoured to represent Outrun Rare in the future miles I log. I’m thrilled to be an Outrunner and am looking forward to throwing myself enthusiastically into this new role and helping to bring awareness to this important cause.
Instagram : @keeley16
Twitter : @milnekeeley
Hi, my name is Nina. I am a mother, an active member of my community, and mental health warrior. I like making a difference and helping others.
I am a relatively new runner, living in Ottawa, Canada. I ran my first 5k in 2015 and have since worked my way up to full marathon. Running has given me the confidence I needed to believe in myself, and I encourage others to give it a try!
I enjoy sharing my passion for running with my children, and also help out with their school’s newly launched running program. I love helping people realize the amazing things they are capable of achieving! I also speak about my experiences to running clinics on behalf of the Ottawa Marathon.
I am always looking for new challenges to take on; gaining new experiences in life. I love finding opportunities to do good through my running. So I am both honoured and thrilled to become an Outrunner, working with the Outrun Rare team and the Rare Disease Foundation. It is my hope to help increase awareness of the challenges faced by those with rare diseases, and to provide support.
Hi, I’m Erik Dinsmore. I am a husband, a dad, and a high needs Special Education teacher, living in northern Minnesota. I am an ultramarathon runner who finds his peace on the solitude of singletrack. I love running long, and running on trail. I love running all distances, but find the most fun at the 50 mile (80k) and longer races. I also happen to have Hydrocephalus caused by a Dandy-Walker malformation. I have been blessed with a relatively healthy life, and by being an Outrunner, I can use my gifts to bring awareness to rare disease and raise funds for much needed research and outreach.
Hi! I’m Katie, I live in northern Minnesota with my hubby Erik, and our awesome Little Man Ezra. I’m a new runner, and unicorn and llama lover. I ran my first half marathon last summer, and I am going for my first full marathon this summer! Oh, did I mention that I have the rare disease Mixed Connective Tissue Disease? This makes the running harder, but running also helps me manage it, so it’s all good! Living with a rare disease, I know the how difficult things can be. By being an Outrunner, I can spread the word about rare diseases and, hopefully, help others like me.
Hi there! I am Andrea Siqueira, I am firstly a mother of three amazing young adults from Okotoks Alberta, I spend most of my week teaching three soulful programs that I run by myself, Kindermusik, ChiRunning and ChiWalking and Simplified Tai Chi.
I thoroughly enjoy what I do and hope to continue to live my life through music and movement.
I am very excited to be an Outrunner because I care about Dave Proctor’s mission and his vision to promote awareness of diseases that are brushed aside and lack funding. I plan to promote Outunrare through the programs I teach especially and create a better world for those suffering in silence.
Heya! I’m Robyn from beautiful Kimberley, BC. Dave Proctor came into my life in 2015; I was inspired by him as a runner and as a human so when he started Outrun Rare I knew I wanted to support it in anyway I could. Running has saved me from myself and circumstance more times than I can count; I run because I can and for the pure joy it brings to my soul and everyday life. Everyday that I get to run fills me with gratitude for the body I’ve been given and the health I am blessed with. Because of that I want to help more people experience the same joy and accomplishment. Being a Fitness Professional allows me to help others improve the life they’ve been given through movement, fitness and wellness. Being an OutRunner allows me to spread the awareness of Rare Disease throughout this community of life lovers. I have always believed that more molecules moving in the same direction creates incredible change.
I am Robyn from the Battlefords, Sask. I am a busy mom of 2 and a registered nurse. I have enjoyed running for the last 10 years; and last year discovered trail running and hiking. The half marathon has been my favoured distance but am thinking it’s time to ramp it up to a 50km soon!
In my career as a nurse as well as in my own family, I have seen the struggles of living with rare diseases. By becoming an outrun ambassador, I am excited to help raise awareness of rare disease out on the trails!
My name is Angela and I live in Calgary with my husband Joey, my daughters, Alex and Katie, and my dog Lily. My daughter Katie was born with a rare disease, Recessive Dystrophic Epidermolysis Bullosa (it is a skin condition which causes her skin to be as delicate as a butterfly’s wings). We were fortunate enough to receive a diagnosis about six weeks after she was born; but not everyone gets a diagnosis that quickly nor gets access to the medical care Katie has been fortunate to receive. Being an Outrunner is important to me as I’d like to help bring awareness to rare diseases and the people living with them. I’ve been a runner for a few years now covering distances from 5k with Alex to running a few half marathons per year. I look forward to sharing the Outrun rare message, and inspiring others.
Hi my name is Véronique Cantin, I am from Québec city and I found out about the rare disease foundation last year. I am 18 and I’ve been working with disabled kids for four years now. I work with them in centers where the parents of special needs kids can drop their child off for the weekend so that they can take a break. It’s because of one of the girls I worked with’s Mother that I found out about the Outrun Rare program. Basically, I only run for causes, so the Outrun Rare program was something that I found extremely interesting! I currently organize races to raise money and awareness for house’s where they take in special needs kids to give a break to their parents.
I’m so happy to be an ambassador for Outrun Rare because one of my favourite things to do is running for and with my partner: Emrick! Emrick has Angelman Syndrome and my goal is to be able to run a half marathon with him in October.
In the name of all the kids I’ve worked with, who most of them, have a rare disease, I am proud to be an ambassador for Outrun Rare!
I am a wife to an amazing and supportive Husband and a mother to 2 Sweet little boys ages 8 and 10. My pastimes when not with my family are running, swimming and cycling. I work as an RN in a rural ER in Southern Alberta. I love the career I have chosen as it allows me to work with people from all walks of life and to gain knowledge on a daily basis. I pride myself in advocating for my patients, and as I see it, Outrun Rare does the same. I see myself as an Outrunner, because I can do something I love ..running…..while at the same time help an amazing organization and represent Outrun Rare during my running adventures and through social media posts.
My name is Melissa Ray. I am a passionate marathoner and ultramarathoner. Professionally, I am an orthopedic nurse in Central Alberta. In my spare time I enjoy hiking and hanging out with my dog. Running is a large part of my life. I am a running coach for Run Collective Red Deer and enjoy helping other runner’s achieve their fitness goals. After my first 100km ultramarathon at Lost Souls in Lethbridge, Dave Proctor had a speech at the post-race breakfast. This race was at a very emotional time in my life. After my grandma was misdiagnosed for eight years, my grandma was diagnosed with a rare disease called sezary disease. During this time I was very inspired by Dave Proctor’s “what’s next” speech. After a few years of my grandma undergoing treatment, I began to feel hopeless. Unfortunately, my grandma passed away in May 2019. After her passing, I began to think, “what next?” I started following Outrun Rare more closely. Taking the Outrunner pledge was a no brainer, I needed to be involved and help other families and sufferers who are living with a rare disease.
Hey all – I’m Tasha. I started running marathons at 17, mostly as cross-training when I was playing AA/NRL ringette. I got introduced to the world of ultramarathon running in 2013 as a last minute sub for leg 2 at the Canadian Death Race. I was instantly hooked, and completely drawn to the challenge of soloing. I have been racing as a soloist since 2014, essentially hitting as many ultras every summer as my IPOS body can hold up to!
Despite feeling stronger and more prepared than ever for this past summer’s ultra season, just 3 weeks out from Sinister 7, my hip fell apart. Hip tendon tears and extensive tendinosis left me unable to weight bear for weeks, completely dependent on crutches to stand or move at all. Overnight, I had gone from being able to easily run 80 miles/2 days, to not being able to even have my left foot touch the ground the next day. All the plans I had for my 2019 ultra season disappeared; I have never felt so broken and absolutely gutted.
Being sidelined as captain of Team IPOS this summer was horrible to say the least – I ugly cried more than I care to admit – BUT volunteering and cheering runners on this summer has only made me feel more connected and supported by the ultra/trail running community than I could have ever imagined. I never expected that being stuck riding the pine all summer would leave me feeling this inspired – and absolutely determined to crush my 2020 comeback post-hip injuries – sorry, not sorry, for being a total cheeseball.
I am beyond excited and honored to join the Outrun Rare Team as an Outrunner Ambassador. I work as a Registered Nurse in the Intensive Care Unit, where the struggles and obstacles that those affected by rare diseases face on a daily basis are far too common, and often have more unanswered questions than definitive diagnoses or explanations. I was incredibly inspired by Dave Proctor when I first heard about his initiative, and continue to be in all his efforts to raise awareness for rare diseases and the struggles of those affected by them. I’m so excited to be part of such an amazing team and incredible initiative, and for everything the coming year has to offer!
See you out on the trails!
Hello from Canmore, Alberta! My name is Ashley Jones, I am the mother of an extraordinary daughter with complex medical needs, health researcher and passionate volunteer, living and playing in the Canadian Rockies. I first dabbled with running in junior high school, but only really developed a love of the sport when I discovered longer distances as an adult. Since becoming a mother I have come to value time on trails so much more deeply. As a way to catch my breath and quiet my brain. As a way to connect to a community of so many extraordinary human beings. Half marathons ignited the spark, but participating in my first team relay in the Crowsnest has inspired me to set 50 and 100 mile goals for the next few years.
I am so honoured to be an Outrunner for Outrun Rare. My absolute favorite thing about running is the conversations you have with the people you meet along the way. As an Outrunner it is a tremendous gift to be able to hear your stories, advocate for awareness with the 1 in 12 living with rare diseases, and to support the work of Outrun Rare and the Rare Disease Foundation.
Hello! I’m Audrey and this is my son, Zachary, who is almost 16yo and has Angelman Syndrome. It is a rare genetic condition characterized by symptoms such as seizures, intellectual impairment, sleep problems, speech impairment, and difficulties with movement and balance. Zac suffers from a lot more like osteopenia, GERD, pollen-food syndrome and else. We live in Quebec City, Canada and loves fresh air. We love being in musical festivals and to travel. Zachary loves to be surrounded by people which makes it easy to go out! He is gonna make a lot of marathons in 2020, in his adapted stroller, to help raise awareness for rare diseases and different respite houses which makes a mom proud!
Hey friends! My name is Matt, but you can call me Shep! I am the do-er of things and the solver of problems. I have made it my mission in life to experience all that this world has to offer and use the knowledge and skills I gather to help others in any way I can. I’m a former combat medic, firefighter, safety professional, spin instructor, running coach, business owner and an all around happy-go-lucky guy.
I am totally stoked to be joining the Outrun team as an official ambassador! I first heard about Dave and his organization after his 3rd place finish at the 6-day Across-the-Years event. I heard his story and learned about the mission he was on and from that moment, I was in like Flynn. I had no idea how under served this massive population was and I knew it was a cause I would be standing behind. If you see me on the trails, don’t be shy with a high-five!
Hello, my name is Kevin Barata. I was introduced to the Rare Disease Foundation at their inaugural Outrun Rare Backyard Ultra Race. I was blown away, to say the least, by the people I met and by the organization itself. Meeting Dave Proctor and learning more about who he is and the mission he’s on is so inspirational. I’m the lucky one. I have good health and an able body to do what I love, run. I started running several years ago and haven’t really stopped! I started with short runs around my neighbourhood and signed up for some local 5km races as a way to stay motivated and have a goal to strive for. Before you know it, I was running 100+ mile races. I’ve raced over 25 ultra marathons (of various distances) over the past 5 years and love the challenges each race brings. We all have different motivations in life that push us forward. I’m proud to represent such a worthy cause to hopefully help bring awareness to Rare Diseases in Canada. I hope through running and motivating others, I can do a small part to shed light on Outrun Rare movement.