Category Archives: Community Matters

Stories on what matters in the PI Community… this is where you’ll find it.

Scotiabank Toronto Waterfront Marathon

Join the 2017 The Immunodeficiency Canada marathon team!!!

Immunodeficiency Canada has participated in the Scotiabank Charity Challenge since 2012 and has raised funds that have helped families living with PI. The Scotiabank Charity Challenge is a special event for the organization because it brings together staff, patients, families, and healthcare professionals for one day as they walk/run together to raise money.

2016 was an amazing year for Immunodeficiency Canada, raising over $11,000, exceeding fundraising goals with an amazing team. This year, building off of last year’s success, we hope to reach new heights and expand the team.

Join the Immunodeficiency Canada 2017 team today. 100% of your donation will go to helping improve the lives of people with PI by promoting early diagnosis and effective treatments through leadership in research, education, and advocacy in partnership with healthcare professionals, volunteers, industry, and government, in thanks to our corporate sponsorship which covers administration costs.

For more information email: contactus@immunodeficiency.ca

To join the team, download and fill out the registration form and email it to: contactus@immunodeficiency.ca

STWM Registration Form 2017Read more

World PI Week: April 22-29

Raising Awareness, Diagnosis, and Treatment of PI Together. 

Be a part of a strong PI community!

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.

You can learn PI factssign the awareness petition, browse events or download resourceswww.worldpiweek.org

Immunodeficiency Canada is proud to be a part of this international effort.

For 2017, we invited participants to “Show Your Canadian Spirit”! Just click on the poster to see how.Read more

Making a Difference! An interview with Wendy Shama

By Dana Ewachow

Wendy Shama

Wendy Shama

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.… Read more

The #PIechallenge What is it?

The #PIechallenge is an awareness/fundraising campaign for PI (primary immunodeficiency) ending on March 14th, 2017.

We’re asking you to bake a homemade pie, post a photo of your pie on social media with our copy/paste PIechallengemessage, and tag 3 friends to take on the challenge. We encourage you to get as creative with your pies as possible. The best 3 pies submitted to Immunodeficiency Canada will be awarded with prizes! *To see our prizes and sponsors, click Read More*

Lastly, we are asking for a donation of $5.  100% of your donation will go to the cause.

#FF0000 Raised $2,131 towards the $5,000 target.

Copy/paste this message on social media:

I am doing the #PIechallenge for Immunodeficiency Canada.

 What is the challenge?

  1. 1. Bake the best – the prettiest, the weirdest, the tastiest – pie you can.
  2. 2. Share the photo of your masterpiece on social media with this message.
  3. 3. Nominate 3 friends to see if they can match your baking skills.
  4. 4. Donate $5.00 to the cause at www.canadahelps.org/en/charities/immunodeficiency-canada/piechallenge 
  5. 5. Eat pie!

 If you want to share your masterpiece with Immunodeficiency Canada, you can tag or message them on Facebook, Twitter, and Instagram. Or, you could email the photo and your name to pie@immunodeficiency.ca to be featured on our social media and entered into our contest for the 3 best pies.

pie-bannerRead more

Ways To Cope – Matt’s Interview

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Matt surrounded by family & friends

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.” … Read more

Ciao Bella Dance Studio presented Casino Night Feb 6th, 2016

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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.… Read more

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 (http://immunodeficiency.ca/) , 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.… Read more

Family Support

Julian and his Family’s Trial with P.I.

By: Dana Ewachow

julianGina  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.”… Read more

A Small Charity With A Big Impact

A Look at RN Brenda Reid and The Alastair Fund

By: Dana Ewachow

BrendaBrenda 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.… Read more

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.… Read more

With Joy and Art

Remembering Their Cousin Japreet

By: Dana Ewachow

JoyArt“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.… Read more

Baden’s Klein Cup

Baden's Cup Banner

Held August 26, 2015, Guelph, Ontario

The game started at 4:00 with the women’s team followed by Baden’s official kick off at 6:00 pm and the men’s team at 6:15 pm. Guelph Gryphons VS Ryerson Rams

Raffles and a barbeque fundraiser were hosted by the Klein Family. Exhibition game organized by Keith Mason, Head Coach, men’s team University of Guelph, www.gryphons.ca

To see raffle sponsors and read more about Baden… Read more