This summer Dave Proctor will be running across Canada to raise funds for the Rare Disease Community his family is a part of. He is appealing for our help to get him moving every morning. Here's your chance to be a part of it!
Dave Proctor's epic Outrun Rare journey will begin on June 27 2018. He'll be getting up every morning at 4:30am in order to complete this monumental task - an attempt to break a world record of running across Canada and raising one million dollars for the rare disease community. But to do this, he's asking for our community's help. He needs our words to remind him of why he needs to keep going every single day.
Please, use this portal to send in a short video (no longer than 60sec) telling…
Many in our community live on a roller coaster as they search for a diagnosis for their child or loved one. It usually takes years and involves many visits to specialists, travel, late night web searches and talking to many, many people. At least half of our community never find a diagnosis and there are few road maps for this journey so we set out to create one! This booklet is the product of literature searches, review of similar brochures by Contact a Family and others, structured interviews with 12 families, several focus groups and many rounds of review by experts from health care and from families. We are so grateful to all who participated and generously gave of their time! We hope this booklet will be a useful guide and support for families as they walk their own unique and winding road.
This beautiful book is touching sweet little hearts everywhere! Author/illustrator Deborah Katz is being incredibly generous and donating book proceeds to the Rare Disease Foundation. Get your copy now! Amazon.caAmazon.com