We provide patient support, education, and research for a cure for Primary Immunodeficiency (PI)
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World PI Week, held during the last week of April, is a global campaign that aims to raise awareness and improve diagnosis and treatment of Primary Immunodeficiency (PI). World PI Week offers an opportunity to inform and educate health policy-makers, schools, families, and the general public about PI. Organizations and groups around the world hold events, conferences, and celebrations in honour of this week. In April, Immunodeficiency Canada launched a month-long campaign to celebrate World PI Week.
On social media, we highlighted World PI Week each day with different features:
- Mondays & Saturdays: What Is WPIW? Facts about how WPIW came to be.
- Tuesdays: WPIW World Celebration. Focusing on how other parts of the world celebrate WPIW.
- Wednesdays & Sundays: Stories from around the World. Showcasing stories of people from around the world living with PI.
- Tuesdays & Thursdays: WPIW Bookmarks. Quotes from PI patients, families, and caregivers.
Our campaign was a huge success! Our social media saw a 10% increase over the month of April. We want to thank World PI Week for providing a lot of wonderful material.
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World PI Week: Immunodeficiency Canada Celebration
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On Sunday, April 28th, Immunodeficiency Canada hosted a pizza party at Boston Pizza in celebration of World PI Week. Families, patients, and friends gathered for pizza, drinks, and great conversation.
Kids were able to make individual pizzas, picking their own toppings. They also
enjoyed artwork, crafts, and balloon animals made by Immunodeficiency Canada staff.
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During World PI Week, people around the world shared their stories about PI. Stories came from patients, carers, family members, and friends. People reached out to Immunodeficiency Canada to help share their stories, including Timothy Bogezi.
When Timothy was nine years old, he was diagnosed with PI (X-linked hypogammaglobulinemia). Timothy was born in Uganda, one of the poorest countries in the world. No one recognized his symptoms of PI.
He was not properly diagnosed until 2007 when researchers of the University of Minnesota met him in his hospital room. The diagnosis was a huge relief for his parents. After finding out was wrong with him, they faced a new challenge: how to get IVIG. IVIG is not currently available in Uganda. The family had to get help from a family friend in Kenya.
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"I would like to thank those who donate plasma because you save so many lives, and you mean the world to me. Without plasma donation, some of us wouldn’t be able to share our story."
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Scotiabank Toronto Waterfront Marathon 2019
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Immunodeficiency Canada has been participating in the Scotiabank Charity Challenge since 2012 and raised funds that help families living with PI. This 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 while being able to raise money to help PI patients and families. All participants will receive free entry and an Immunodeficiency Canada t-shirt.
Join the Immunodeficiency Canada 2019 team on October 20th, 2019, and help children and adults born with a Primary Immunodeficiency (PI).
100% of your donation will go to helping improve the lives of people with PI. We promote early diagnosis, effective treatments, and thorough leadership in research, education, and advocacy. We also partner with healthcare professionals, volunteers, industries, and government representatives. Administration costs are covered thanks to our corporate sponsorships.
Click
here
to register for the team.
Show support to the team by donating:
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Teen Outreach Program Connects Teens with Immune Deficiencies!
An escape room was a perfect location for our annual Immunology Teen Outreach Event, which brought teens with Immune deficiencies together to figure out puzzles and clues to get out of a locked room. Time together during lunch provided an opportunity for them to connect and share experiences. Our thanks to Immunodeficiency Canada for their support in providing an opportunity for these teens to connect with others like themselves.
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Hospital for Sick Children Has Another Successful Kids' Day Picnic!
Saturday, June 22nd, was an amazing day of fun and an opportunity for families with children diagnosed with Severe Combined Immunodeficiency Syndrome, as well as other Primary Immunodeficiencies, to connect with one another and staff from SickKids. We had an amazing turnout with over 100 people coming together to meet in a relaxed and fun-filled environment.
Our thanks to Immunodeficiency Canada for their ongoing support of this incredible afternoon!
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Do Something: The Jeffrey Modell Story Webinar
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On August 14th, we hosted a webinar, presenting the new documentary "Do Something: The Jeffrey Modell Story" that was recently released by the Jeffrey Modell Foundation. The documentary followed young parents Fred and Vicki Modell, who were overjoyed by the arrival of their first child, a perfect baby boy. They named him Jeffrey.
Just months later, it becomes clear that something's wrong. Jeffrey is diagnosed with a rare disease that leaves him frequently sick and perilously susceptible to even the most common cold. He begs his parents to "do something" and though they desperately try, Jeffrey ultimately succumbs to his illness at the age of 15.
Out of their devastating loss, Fred and Vicki turn to their enduring love for each other to find the strength to fulfill their promise to Jeffrey, and they resolve to "do something." With just $500 in the bank, the couple sets out in search of answers and what took his life. Guided by Jeffrey's memory and the hope to help just one child, Fred and Vicki turn pain into purpose and end up touching the lives of parents and children all across the world. Millions of lives have changed forever because of Fred and Vicki’s determination to "do something."
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Over the summer, Immunodeficiency Canada did a social media campaign, showcasing the importance of plasma donation. Any healthy person who meets Canadian Blood Services' eligibility criteria can donate plasma as frequently as every seven days. To become a plasma donor, having a history of making regular blood donations helps, but is not always necessary. Donated plasma is used to make plasma-derived protein products for therapies and treatments.
This year, there have been lots of headlines about plasma shortages around the world. To help, Canadian Blood Services has announced that, with the support of funding governments, that they are planning to open 3 proof-of-concept sites in Sudbury, ON, Lethbridge, AB, and Kelowna, BC. These sites will be dedicated to the collection of source plasma, which is the blood component used to make specialized medicines from the proteins in human plasma. The protein products that are derived from source plasma are used in the treatment of patients with a variety of life-threatening conditions. In addition to the 3 sites in Sudbury, Lethbridge, and Kelowna, Canadian Blood Services will continue to collect plasma through the blood collection process at other donor centres across the country.
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Newborn Screening for SCID
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Immunodeficiency Canada is a pioneer in bringing newborn screening for SCID to Canada. In 2013, Ontario was the first province to test for SCID (Severe Combined Immunodeficiency).
"This is a monumental triumph to children born with severe combined immunodeficiency (SCID) and their families. Newborn screening will detect this problem early before complications develop, and allow for prompt life-saving interventions such as bone marrow transplantation. Usually, the diagnosis of SCID is either missed or delayed until the age of 6-12 months of age, after patients suffer from severe and recurrent infections,
and sometimes irreversible damage to organs such as the lungs. Newborn screening for SCID will no doubt save many lives and prevent the suffering of children."
Professor Chaim Roifman, MD, FRCPC
Chair and Scientific Director, Immunodeficiency Canada
"We are proud of our initiative to bring newborn screening for SCID to Ontario and look forward to working with the other provinces and territories to make it nationwide."
Richard Thompson
Chief Executive Officer
Help us in our quest to get newborn screening for all of Canada by sharing stories with us about your challenges with getting diagnosed.
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Disability and Personal Finances
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Interested in Learning More About Disability & Personal Finances?
Ed Arbuckle is the author of "The Family Guide to Disability and Personal Finances." This book is directed at helping individuals with disabilities and their families find financial solutions to the financial challenges of disability. A very common concern of families is their difficulty in getting information that makes sense and lets them move on. The search for answers is filled with complexity, while perhaps not a Rubik's Cube, it certainly is a jigsaw puzzle with more than a few pieces.
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Would you like to participate in a webinar about this?
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When is the best time to host this webinar?
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Joseph Zuraw, Senior Director of Public Affairs and Lauren Syring, Manager of Public Affairs of Grifols, Washington, visited Richard Thompson, CEO, at Immunodeficiency Canada on University Avenue, Toronto.
“We really enjoyed spending time with you in your new office and hearing about all the great achievements and initiatives of Immunodeficiency Canada. We look forward to continuing our long-standing partnership.”
Lauren Syring
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Immunodeficiency Canada Moved!
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Immunodeficiency Canada moved to 439 University Avenue, Suite 848, Toronto, Ontario, M5G 1Y8.
Richard Thompson, CEO, extends a special thank you to Andrew and Matthew of Cushman & Wakefield in helping Immunodeficiency Canada find a new home in a very tight rental market in Toronto. Andrew and Matthew work with companies in the technology, insurance, healthcare, and not-for-profit sectors. They help these companies find the best possible workspace to allow them to meet their business objectives, account for growth, and to help them attract and retain top talent. You can reach Andrew at 416 359 2449,
[email protected]
or Matthew at 416 359 2446
[email protected]
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Andrew Boutilier
Senior Associate
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Matthew McTavish
Vice President, Broker
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Newsletter Editor:
Dana Ewachow
Contributors:
Shirley Lau, Brenda Reid, Wendy Shama, Richard Thompson
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Immunodeficiency Canada is supported by our Cornerstone Sponsors:
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Immunodeficiency Canada is supported by our Builder Sponsors:
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Connect with us on social media:
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