Reviews and recommendations are unbiased and products are independently selected. Postmedia may earn an affiliate commission from purchases made through links on this page.
FUNDING HOPE: While some medical conditions like cancer get a lot of love, attention and fundraising dollars — Canadian Cancer Society’s Daffodil Ball recently pulled in $1.3 million — lesser known diseases suffer from visibility and under funding. Now imagine you are among the one in 12 Canadians (nearly three million) who are affected by a rare condition, so rare that it has no name and generally no treatment protocol so meaningful advancement usually takes place through trial and error.
There are more than 7,000 diagnosed rare diseases and an equal amount of undiagnosed diseases, says David Cox, executive director of the Rare Disease Foundation and event co-chair of Rare Finds 2019, an initiative to shine a light on rare conditions and raise vital research dollars to improve the lives of those loving with a rare condition.
A rare disease is defined as a condition affecting fewer than one in 2,000 people. Most known rare disorders are severe and chronic, with many being degenerative and life threatening. Patients are almost always young children. Poorly characterized, many conditions remain unnamed. And without a specific diagnosis, patients can be denied access to care and necessary medical support services.
The Rare Disease Foundation was established in 2009 by a dedicated group of parents and doctors who envisioned a means of finding more answers for patients with rare or undiagnosed diseases. A need was identified for an umbrella foundation that would bring together all rare diseases, to unify research efforts and to unify the voices of those living with a rare disease.
Since its creation a decade ago $1.9 million has been raised to support critical research into various rare conditions. The foundation’s microgrant program provides funding, equal to $5,000, to researchers to directly improve patient care. The program has developed life-changing therapies for 11 different rare diseases. Microgrant supported research has also led to the discovery of 15 new genes causing rare disease.
To mark the foundation’s 10th anniversary and further champion research, the organization welcomed 250 supporters to its annual Rare Finds culinary gala at VanDusen Botanical Garden. Featuring two dozen of Vancouver’s talented chefs, mixologists and craft brewers, guests enjoyed an evening of fine food and drink and the comedic talents of Cash Cab host Adam Growe, while funding 16 new patient-focused microgrants to improve the lives of those living with a rare condition.
Notables making the scene included MP Jenny Kwan, Dr. Millan Patel, research director and co-founder of the Rare Disease Foundation, and Salt Spring Coffee COO Ulrich Laue, a parent of a child diagnosed with a rare condition.
Children’s Heart Network Wine Gala and Dinner
WINNING HEARTS: The Children’s Heart Network offers support and hope to families living with congenital heart disease. Reportedly, one baby out of every 100 is born with heart disease. This year in British Columbia, another 500 families will receive the news that their child has a heart defect. Half of those children will require medical intervention. The Children’s Heart Network was formed in 1992 so no family would have to embark on their heart journey alone.
CHN supports children and families through a variety of programs and services including a parent resource program providing social opportunities for families to connect and support one another. As well, the not-for-profit also organizes a yearly summer camp for kids to come together with other kids who have faced similar medical challenges. To further fuel their efforts and send more heart kids and parents to camp, regardless of their financial ability to pay, CHN hosted its 17th annual Wine Gala and Dinner.
Fronted by heart parents Hege Bolthof Hoegler and John Emmet Tracy, a capacity crowd filled the Villa Amato Ballroom in False Creek for the $150-a-ticket food and drink tipple fest. Following a royal repast and spirited bidding on coveted bottles of wines, and unique one-of-kind experiences, attendees heard from Abbotsford’s Sabrina Robertson, and her young son Zachary, born with a rare heart condition. Zachary has had two open heart surgeries, a stent, and a shunt inserted, and is currently awaiting a valve replacement.
“It’s great to be a part of an organization who cares and understands so much of what you’re going through as a parent to a child with congenital heart disease.” says Robertson. “And for Zach and our family to meet others who are going through similar, means we’re not alone on this journey.”
The family’s tearful story would unleash a torrent of donations during the call out for cash. The show of love would net the CHN $87,000 — $30,000 more than last year’s record haul.
UBC School of Nursing Centenary Gala
CENTENARY CELEBRATIONS: Established in 1919, UBC’s School of Nursing marked its 100th anniversary with a massive party at the Hotel Vancouver. As the first to offer a university degree in nursing in the whole of the Commonwealth, the school has been hosting special events, lectures, and reunions.
Celebrations recently culminated with the school’s Nursing 100 Gala staged at the historic hotel where the first UBC degrees were conferred.
Led by School of Nursing director Dr. Elizabeth Saewyc, more than 425 guests — alumni and friends, faculty, emeriti, staff and students — made the scene including UBC president Santa Ono, and Faculty of Applied Science Dean Dr. James Olson. Minister of Advanced Education Melanie Marks and even Queen Elizabeth II sent greetings to the royal luau.
In recognition, the school presented one hundred individuals with Centenary Medals of Distinction. Nursing leaders were cited for their achievements and contributions transforming the health of all in health research, health advocacy and health education.
Among the esteemed group of Centenary medallists: Tarnia Taverner, for her leadership and innovative research in pain management; Kelli Stadjuhar, for her leading role in palliative care nursing, Helen Shore, descendant of Florence Nightingale, for her advocacy in public health nursing; Alison Phinney, for her research with people living with dementia; Stephanie Ngo, for her international leadership working with the World Health Organization and Lily Lee for her philanthropic efforts to health-related causes.
“Every single recipient has brought high honour to the School of Nursing and to the faculty as a whole,” said Ono. “Their contributions and solutions to the grand challenges of our era play a critical role in our health care, global health and in making UBC and Applied Science a world leading institution.”