Scotiabank Toronto Waterfront Marathon
Congratulations to the entire Immunodeficiency Canada Scotiabank team for a great year. On Sunday, October 20, with the sun was shining, the team walked and ran through the streets of downtown Toronto, helping raise awareness to PI. Thank you to our amazing team for raising over $8500.
Thank you to all our donors that supported our team.
Making a Difference!
An interview with Wendy Shama
By Dana Ewachow
I met with Wendy Shama at the Zavida Coffee right across from Immunodeficiency Canada’s downtown office. That day, she had to push back the time of the meeting by an hour. During the hour we spoke together, she received two calls. She is unmistakably busy, juggling her social work at SickKids and her involvement with Immunodeficiency Canada. She manages a multitude of demands, and she does them successfully. This year, she received the Dr. Beverly Antle Legacy of Hope Award. The award is presented to an outstanding social worker who through the integration of clinical practice, teaching, and research has made a difference in the lives of children and their families. The award is given out every two years.
Shama has worked at SickKids for 22 years, specializing in the Leukemia/Lymphoma population in addition to the Immunology families whose children are undergoing a bone marrow transplant. There are fewer families with children who have Immunodeficienciesis than children with Leukemia/Lymphoma, but Shama still devotes an incredible amount of time and focus on them.
World PI Week: April 22-29, 2019 Raising Awareness, Diagnosis and Treatment of PI
Each year, World PI Week, held the last week of April, is a global campaign which aims to raise awareness and improve diagnosis and treatment of Primary Immunodeficiency (PI). Explore the website to learn how you can make a difference and ultimately improve the quality of life of people with PI world-wide.
Join the global movement, learn, educate and share #MyPIStory on our social media or email it to us at contactus@immunodeficiency.ca
You can learn PI facts, sign the awareness petition or download resources. www.worldpiweek.org
The problem with “Everything, Everything”
How Nicola Yoon’s YA Novel Misrepresents Primary Immunodeficiency
An editorial by: Dana Ewachow
In early September, I heard about a new Young Adult novel that had a main character with SCID (Severe Combined Immune Defiency). As an employee of Immunodeficiency Canada, I was excited. Primary immunodeficiencies are rarely presented in the media, beyond the occasional news piece, so finding a book that was predicted to grace the best-seller list felt like a step in the right direction. Nicola Yoon’s “Everything, Everything” was advertised to be the next big hit, with expectations of a movie deal (http://www.mtv.com/news/2261250/nicola-yoon-interview/). It was compared to John Green’s “The Fault in Our Stars”, a love story mixed with the obstacles of disease, and was expected to have the same success.
Family Support
Julian and his Family’s Trial with P.I.
By: Dana Ewachow
Gina shows me a scrapbook she’s made of her son Julian when he was two years old. This scrapbook is different from the average family album; the photos are adjacent to long lists of medications. In the photos, Julian is smiling sweetly, his cheeks puffy from a reaction to the drugs. The scrapbook was made to commemorate his battle with primary immunodeficiency. Gina admits that she did it for Julian, who is now eight years old. “He has the right to know,” she says. “Look at where he’s been. Look at where he’s at now.”
When Julian was 18 months old he was diagnosed with the rare immune condition CGD (Chronic Granulomatous Disease). He was admitted to Sick Kids Hospital for seven months to conduct a multitude of tests. After a tense two-hour meeting with a board of doctors, it was decided that he would be set up for a bone marrow transplant. His then seven-year old sister, Alyssa, was a complete match. This was a lucky break for the family, because there is smaller chance of having complications with a transplant with a sibling donor than with an “outside” donor. On September 8th, the day of the transplant, Gina found herself running between the 2nd floor to see Alyssa and the 4th to see Julian.
A Small Charity With A Big Impact
A Look at RN Brenda Reid and The Alastair Fund
By: Dana Ewachow
Brenda Reid is the Clinical Nurse Specialist for the Immunology and Allergy clinic at Toronto’s Hospital for Sick Children. She’s also considered an official champion by the Immunodeficiency Canada for her work with patients with PI (primary immunodeficiency). Reid admits that her PI patient relationships span across her career. She’s currently on her second generation of patients; she currently sees the sons and nephews of men she had taken care of when they were teenagers. “It’s a privilege to be a part of these peoples’ lives,” she says.
Primary immunodeficiency is an umbrella definition for genetic conditions in which the immune system is either defective or missing. There are over 250 genetic disorders that could be classified as PI, though many people who suffer from PI could suffer without diagnoses or treatment. Treatment of immunodeficiency has changed dramatically in recent decades. Reid admits in the past, few people suffering with PI lived past thirty. In the 1980s, the survival rate of those suffering with PI was 30-50%. Now the survival rate is over 80%.
Ways To Cope – Matt’s Interview
I walk into the ward at Sick Kids Hospital, and with the help of two patient nurses, I’m directed to the room I’ve been looking for. The room is spacious and lined with lounge chairs. Each chair is occupied by a child with their own IV, reading books and watching shows on portable devices, prepared for the long wait. Matt is in his own chair, with an IV tube in his arm. His mother, Sally, is sitting beside him. She waves me over.
Matt only started doing IVIG (intravenous immunoglobulin) therapy last May. He gets IVIG therapy every four weeks, thirteen times a year, travelling from his home in Barrie to the hospital in downtown Toronto. “We leave at quarter to seven in the morning,” Sally tells me, “and get back at quarter to seven at night.”
Ciao Bella Dance Studio
Presented Casino Night Feb 6th, 2016
Immunodeficiency Canada was honoured to have the support of Ciao Bella Dance Studio through a Casino Night that took place in Woodbridge, Ontario, February 6th, 2016. Special thanks goes out to the organizing committee.
The Luck of the Draw
Everyone Wins at Toronto’s Capital Connection’s Raffle
By Dana Ewachow
The reception for ACG’s (The Association for Corporate Growth) Capital Connection event took place in Ripley’s Aquarium in downtown Toronto on Tuesday November 11th. Capital Connection, where the best business leaders in North America mingle, sponsors one charitable organization each year; this year, Immunodeficiency Canada was the fortunate beneficiary. As a member of Immunodeficiency Canada, I helped set up our tables – one stacked with informative pamphlets for our cause, the other advertising the prizes for our raffle – on the bottom floor next to the Dangerous Lagoon. Out of the corner of my eye, I could see sharks circling in their tanks. In the other corner, I watched the business elite circle the reception, slick in grey and navy suits. I couldn’t help but be intimidated.
My anxiety disappeared when they approached our table with curiosity. They scoped our amazing selection of prizes: an iphone 6, dinner at Los Colibris, prime seats to sports games, a travel package worth $2000, and the ultimate prize of a one-year lease of a Porsche. Piqued by the possibility of a good deal and the taste of competition, they hovered by the raffle tickets. When we mentioned the money was for a good cause, the bottoms of the raffle bags started to fill. To no one’s surprise, the bag for the Porsche Cayman was the heaviest.
With Joy and Art
Remembering Their Cousin Japreet
By: Dana Ewachow
“She was a happy child. She loved art,” says Gagan Grewal, gesturing towards a framed picture of a feather that her young cousin, Japreet, had made.
I sit across from Gagan on a couch in her livingroom. Japreet’s parents live next door. “Her room is still her room,” she says, admitting they haven’t changed a thing. She describes the family’s current life as incomplete. I can sense this on the couch. It’s in the way that Gagan talks. It’s in the photographs that sit on the tables. This home aches. “You can’t make a puzzle with a missing piece,” she tells me.
Japreet’s condition was a complete mystery to her cousin. With a family that had no history of serious medical issues, Japreet’s physical health was strange and scary. When she was eight, she was suffering fevers three or four times a year. She caught pneumonia and was in and out of Sick Kids hospital. After seeing Dr. Chaim Roifman, they discovered that Japreet had a STAT 1 mutation, a primary immunodeficiency.