We're often asked how we raise funds and awareness for our cause. Below is an outline of some of our key events over the past few years.
What you do not see on this list is the families we have connected with and walk alongside. Together we navigate this labyrinth of medical appointments, decisions, heartache and joy. We support each other as we enter an unknown place without any answers.
Also unseen is the outstanding support, both monetary and personal that we have received. Individual donors with no connection to Complex Lymphatic Anomalies have reached out and generously supported our cause.
Our community, especially peers, have been supportive of our journey and inclusive of the differences that arise from living with a Rare Disease. This support has been cultivated from an understanding arising through educational endeavours we have fostered.
We thank each and every one of you for your ongoing support and commitment to walking beside us as we move forward with hopes of finding a cure.
All funds raised go directly to the Vascular Anomalies Clinic at The Hospital for Sick Children in Toronto (SickKids). All funding is used to help support the growth of the clinic so they can better serve their patient population.
The Vascular Anomalies Clinic is one of the few Canadian hospitals that accepts patients with Complex Lymphatic Anomalies (CLA's). SickKids offers very specialized treatment to patients including diagnostics and surgeries that remains unavailable in other parts of Canada.
As the clinic grows it requires more support from doctors, nurses and support staff. This year (2024) part of our funding will be used in the hiring of a Fellow specifically for the Vascular Anomalies Clinic. Working alongside the primary physician, the training of a Fellow in this specialized environment will allow better access to care for patients experiencing CLA's. It is a major step in ensuring all those afflicted can access the care they require both now and into the future.
December
*Presenters at the National Commission on Lymphatic Diseases (NCLD) Town Hall Forum II
National Institutes of Health (NIH)/ National Heart, Lung, and Blood Institute (NHLBI)
Worldwide, Virtual
*Toy Drive in support of McMaster Children's Hospital
Golden Horseshoe, ON
*Tea Fundraiser ($350 donated)
Golden Horseshoe, ON
*Presenters to the Rotary Club of Fonthill
to create awareness and understanding of CLA's and rare disease challenges within Canada
Fonthill, ON
June
*"Million Dollar Mile" walk in support of the Lymphangiomatosis and Gorham's Disease Alliance fund for research
Niagara Region, ON ($25, 397 donated from all walkers and bike riders worldwide)
May
*Soccer Tournament Snack Table ($300 donated)
Niagara, ON
April
*Became a SickKids Ambassador!
Toronto, ON
March
*Design the 2024 Million Dollar Bike Ride shirts
ongoing sales with funds donated to LGDA Million Dollar Bike Ride to support medical research for CLAs
www.bonfire.com/mdbr-lgda-adult/
Worldwide
February
*Elementary School presentations/activities to create awareness of Complex Lymphatic Anomalies for Rare Disease Day, Niagara Region, ON
January - December
*Offering support to both patients and families. This support comes in many forms including; practical, mental and emotional
Worldwide
December
*Toy Drive in support of McMaster Children's Hospital
Golden Horseshoe, ON
September
*Cheers with Beers Fundraiser in support of the Vascular Anomalies Clinic @ SickKids
Fonthill, ON ($7,295 donated)
June
*Million Dollar Bike Ride in support of the Lymphangiomatosis and Gorham's Disease Alliance fund for research
Niagara Region, ON ($30, 511 donated from all riders worldwide)
October
*Mental Health Webinar Presenters, Lymphangiomatosis and Gorham's Disease Alliance
Worldwide, Virtual
March
*Keynote Speakers Why Understand Rare Diseases?, RareDIG, Rare Disease Day, Montreal Neurological Institute,
Montreal, QC
February
*Elementary School presentations/activities to create awareness of Complex Lymphatic Anomalies for Rare Disease Day, Niagara Region, ON
January - December
*Offering support to both patients and families. This support comes in many forms including; practical, mental and emotional
Worldwide
December
*Toy Drive in support of McMaster Children's Hospital,
Golden Horseshoe, ON
*Brave List, Santa Claus Parade SickKids Float
Toronto, ON
July
*Donor of the Week, Donor Spotlight Page, The Hospital for Sick Children Foundation
Worldwide, Virtual
June 18
*Strawberry Social to benefit the Vascular Anomalies Clinic at SickKids, DeVries Fruit Farm Fenwick ON ($5,141.15 donated)
*Sound Healing with the Gong and Yoga Fundraiser to benefit the Vascular Anomalies Clinic at SickKids, Lisa's Yoga
Niagara Falls, ON ($1,000.00 donated)
May
*Patient Perspective Series Guest Speakers, RareDIG,
Montreal QC
April
*Parent Perspective, Guest Speaker, Not So Rare Podcast, Worldwide Virtual
*Incorporated within Canada
*10th Birthday Fundraising Event
Niagara Region ($10,000 donated)
February
*AllStripes (PicnicHealth) Ambassador representing Complex Lymphatic Anomalies
Worldwide
January - December
*Offering support to both patients and families. This support comes in many forms including; practical, mental and emotional
Worldwide
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