Look at Us; We are A-1 Kids – with Host, Mimi McPhedran
As co-founder and former president of Alpha-1 Canada for 12 years I was asked to share with the global Alpha -1 community a snapshot of our children’s program and services established over the years. Past Executive Director, Jim Mundy and I are very proud of the development and success of the “A-1 Kids” program.
Goals and objectives of the program were to basically address the issues children and their families experienced once faced with a diagnosis. Over time, the program grew providing information on treatment options, recommendations on lifestyle choices and changes, diagnosis of other family members and emotional support for parents and their children to name a few. We offered parent peer and support groups, webcasts and live presentations, publications, media materials and a softcover book; all endeavouring to reduce fear born out of a lack of understanding.
The road to implementation of this program was a long one and progress in the infancy stages was slow but never without individualized support services for our Alpha-1 parents.
2005 saw the humble beginnings of the organisation. With the population of Canada being 33 million, it was projected that the number of Alphas ranged between 5000 – 7000, the majority being undiagnosed. We quickly recognized that, of those, the number of diagnosed children would possibly be much less than 100. Not surprisingly today, the number of diagnosed children still remains low, giving rise to good and bad connotations.
The vastness of Canada, as the world’s second largest country, encumbered our efforts. The major question became, with limited funds, how we would address this complex outreach problem of connecting with and educating parents, the general and medical communities. By gratefully accepting the gracious assistance of the US Alpha-1 Association via the esteemed, John Walsh, we filled an immediate need for print materials borrowing theirs until funding was available to develop our own.
Our website became the initial search engine for Canadian resources both in English and French.
Time progressed with additions to the program. In 2014, after much effort and lots of consultation with medical, educational experts, and parents, and of course children, we developed a colourful children’s storybook – “Look at Us, We are A-1” for kids ages 3 to 7. The book is written in age appropriate language with the goal of inspiring dialogue between parents and their children, and their medical team. Hot off the press, the book was sent free of charge to all sick children’s hospitals across the nation, the children in our database, and for a nominal postal recovery fee the book went global and arrived in many countries. With rave reviews, requests were made to reproduce the book in several languages.
From the book, the children’s mascot was born, a stuffed green, friendly, lovable, dragon named “Alphazilla”. Further, we purchased stuffed puppets resembling Alphazilla and sent them to many children receiving heartfelt expressions of thanks.
Moms, dads and children shared their stories of how their children took the books and Alphazilla to school to share with their classmates. They were able to talk about why they missed school, what they went through when they visited the hospital and their medical team. For children that received a liver transplant it helped open doors about their journey.
Sick Children’s Hospitals requested more copies and took full advantage of using the book distributing it to other departments describing that each page held an introductory opportunity of communal discussion in a simple, cartoon format. Cover to cover, the pages are pack full of children having fun. The story leads well into basic topics of genetics, ultrasounds, drawing blood, x-rays, nutrition, exercise, things to avoid, spirometry test and helps enforce that all children are A-1!
The book is available on the website http://alpha1canada.ca or you can contact Angela Diano, Executive Director at 1.888.669.4583.
The above brief historical overview underscores the struggles of fundraising issues that determine progress in any organisation’s ability to deliver new and innovative programs and services. Why reinvent the wheel when collaboration and resources are available?
I will be hosting the forum should you have any questions. I look forward to talking with you.
In addition, beyond the forum time frame, although I am now retired, I would be happy to continue dialogue if I can be of further assistance on other organisational topics.
Let’s Talk! – with Mimi McPhedran
Mimi is hosting this blog discussion forum and will be available to ask questions concerning Alpha-1 children and their families, share more about how the Alpha-1 Canada Kid’s Program came about and any topic surrounding Alpha-1 children.
We invite you to join the conversation at the bottom of this page.