Month: May 2024

Suzanne Reisler Litwin has been fundraising for JDRF, quite close to the organization’s founding and has a goal of raising $50,000 for this year’s Montreal JDRF Walk to Cure Diabetes to support type 1 diabetes research.

Suzanne Reisler Litwin, born and raised in Montreal, is a mom and an educator at Concordia University in the Continuing Education department.  She also teaches creative writing courses at the Cumming Centre. She holds creative writing workshops depending on where the need is and writes a bi-monthly column in The Suburban newspaper.

JDRF recently had the chance to talk with Suzanne about her more than 40 years of fundraising for the organization and her hopes for the future.

JDRF: Tell us about your time with JDRF and why you’ve been so committed to the cause for so many years.

Suzanne: It started 43 years ago, when I was 18 years old, in 1981. I think I was 17 and I had a little crush on Jimmy Garfinkle’s brother David (brothers who live with type 1 diabetes and are members of JDRF’s Montreal-based founding families).  So when he asked me to do the Bike-a-Thon (one of the first JDRF fundraising events), I obliged. I took a few girlfriends with me, and we were all eager to help and support the type 1 diabetes (T1D) community.  It was very grassroots, the way in which we got donors, you had to go door-to-door and ask for support. It was a 50km bike ride, and people would donate 10 cents or 25 cents a kilometer.  We had sponsor sheets, and once the event was completed, we went back to the donors to collect the proposed funds.  Everything was in coins and dollars. I had to go to the bank, roll the coins, and make a cheque for the foundation.

As for me and David? David and I were not to be.   But I ended up marrying Jimmy’s best friend, so we stayed very close, raising our families together and being forever friends.

For me, raising donations for the Bike-a-Thon was fun.  A sponsor would offer a dollar a kilometer, and it was amazing. In the first year, I raised about $100, then a bit more, and then a few years later I raised $1000 and became an Executive Rider. That provided us with an executive rider tent.  At that point, the event had moved from Hampstead to a larger location because it was getting too big for the original location.  We would ride a 5km route, and do it 10 times, riding through the city of Montreal.  

At this point as well, I was given more tools to reach out to more people who had already sponsored me. In 1987, I started sending letters to my sponsors. The organization was called JDF (Juvenile Diabetes Foundation) at the time.  They gave me the JDF letterhead, and I used it to type out my personalized text, and we ran it through the printers. Everything was done by hand; nothing was digital yet. I didn’t realize it then, but these 20-25 letters would become the cornerstone of my fundraising efforts.

Those JDF sponsor letters produced $2, 3, 4K – and then I got creative. I decided the best way to get funds was to give a ‘gift’ or a ‘gift with purchase’.  In 1997, I wrote a rap, in 1998 I wrote a ‘cheer; in 1999 I ‘sent a penny’ as our team’s lucky charm.  I gave everyone a penny hoping to raise more money, the next year I increased it to a nickel.  Then I started to give items from the dollar store, like a mirror, for our theme “mirror mirror on the wall’, asking our sponsors to look into the mirror and see an amazing fundraiser.

For my 20^th year JDRF fundraising anniversary, I sent a wedding anniversary invitation.  The following years, I would send Blackjack playing cards, lottery tickets, post-its, anything that was flat, light and inexpensive, went into the letters. People started anticipating a theme. I’d get stopped in the grocery store and people would ask me, what’s this year’s theme?

In 2004, we switched from the Bike-a-Thon to the Walk (JDRF Walk to Cure Diabetes). During the ride, four years in a row, we had terrible weather. Rain, snow, people were freezing, the Bike-a-Thon, now called the Cyclothon was in May, which can still be dicey weatherwise in Montreal. We looked at each other and said there had to be a better way. So, we switched to doing the Walk (which takes place in June).

It was around this time, I started focusing on annual fundraising themes, and then in 2013, I made the switch to digital media. I was able to work with super talented graphic designers. When I turned 50, the theme was, “50 Shades of Suzie”. The gift with the letter was a 50 cent coin!  At this point, all my sponsor letters and fundraising went digital and the campaigns were raising $15K to $20K, went to $25K, The campaigns were really consistent with these big numbers and everybody was still receiving gifts. The campaign themes were becoming entertaining, which caused some curiosity.

Today, I cap the sponsor letters at 250. It’s just enough so I can keep costs down, and still raise a significant amount of funds.  (JDRF note: Suzanne doesn’t charge anything back to JDRF and everything is done out of pocket).

After the pandemic, I realized the strength of social media and how powerful it can be. With social media, I was able to create ‘interactions’ with my sponsors and media followers.  I think it was in 2022, I’m just learning how to do these things, as I’m no spring chicken, ya know.  I had my face photo shopped into Rosie the Riveter.  Instead of the statement ‘We Can Do It!’ we wrote, ‘We Can Cure It’.  We sent our sponsors a red bandana and asked them to take a photo wearing it and making the hallmark fist pump. The photos got posted to social media everywhere.  That’s when the campaign got traction. People would ask me for a bandana.  We had so many photos of people, babies, children, dogs doing Rosie the Riveter. We raised a lot of funds for this campaign and I realized the power of social media and interaction.  People wanted to be part of this “Fun-raising”.  Anyone who asked me for a bandana, I would say sure, but I would also ask for a donation to JDRF.

Last year (2023), we sent our sponsors round colourful glasses, based on the 1960’s and a groovy theme. The campaign created wonderful interest, curiosity and amazing participation. We raised over $44,000 trucking down the JDRF highway!

This year (2024), we sent big $ dollar sign rhinestone gold necklaces and feathers. Our theme and slogan is ‘Viva Las Curas’ (Live the Cure), which is based on the glamour and high rollers of Las Vegas. I really had to think hard this year – How was I going to spin Vegas into a diabetes cure?  The idea took months, what were we going to send, how can we mail it?  We landed on FEATHER$$ and Viva Las Curas.

Today, we are so far so good. I am receiving Viva Las Curas pictures, and we are on track. Every month, I need to raise about a third of my goal leading up to the Walk. I believe there is a good chance I might get close to $50K.  We hope everyone participates. It’s all about the T1D community, having fun; I call it ‘FUN-raising’. It’s also about awareness, and helping more people learn about T1D and its impact on people who live with it.

But… I must emphasize – I don’t do this on my own. I have a team of people who work with me every year. Excellent printers, graphic designers, artists, friends and family and we regroup every year, and think about how we can do it again, even better, next year.  The JDRF Staff/friends (Staffriends) are the most amazing people to work with.  JDRF and its staff are simply the most BEAUTIFUL and THE BEST!  We couldn’t do what we do without this amazing organization and peeps.

Even my Mom, who will be 90 years old, is a huge participant in the complete process.  It’s a family thing, and it ends up being a very big part of my life, our lives.

It’s not just a fundraising campaign, it’s part of the landscape of who I am.  And I have two personal feelings about it – I like to finish everything I start in my life.  I feel I started this, and it’s not finished, so I continue.  My other personal quest is, if it should happen, if there is a cure for T1D realized in my lifetime, we, our team, would be a part of that success.  That my time here on earth was useful, not just for my family and my career, but for mankind. I don’t ever want to give up that opportunity of a T1D ground breaking success.  Even if it doesn’t happen in my lifetime, I can still rest knowing that we have tried, in my life, to change the trajectory of mankind, and that we never gave up.

Even when I see people using their CGMs (continuous glucose monitors that measure blood glucose levels in people with diabetes), I feel we helped contribute to that. Non nobis solum, Latin for ‘not for ourselves alone’.  Not just for us, but for everyone.  We go through life as yourselves, and those closest to us.  I ask, what is your footprint in this world?  This is our opportunity to maybe create a life changing footprint. For this, we are not willing to give up. I believe something will be realized soon (when it comes to cures for T1D).  If not in my lifetime, perhaps in my children’s lifetime.  This is the wonderful opportunity that we work with and love.

JDRF gives me almost carte blanche to do what I want. Other organizations don’t provide that type of freedom, I share the campaign theme with my JDRF co-workers, I get the OK and I can exercise my creativity.  Then we run with it.  We trust each other.

It’s a gift for me, that I can continue to do this year over year. I love it. It’s a tremendous, creative space for me.  The Walk brings people together in an enthusiastic way.  This year I have so many more requests from people who want to join our team, Suzie’s Sweethearts, who will embrace our Vegas showgirls and showguys theme. We will all be wearing special T-shirts and FEATHER$$ at the Walk this June.

This year, while walking, we will give away our feathers and necklaces to children walking near us.  By the time we finish, we don’t usually have what we started with as we share the joy while Walking to Cure T1D.

After the Walk, team Suzie’s Sweethearts goes back to my home, to relax and enjoy the accomplishment. Then I get into bed around 3pm, and I sleep for hours in the most content sleep.  When I wake up I usually say, ‘OK, what’s next’?

Other organizations have tried to poach saying, ‘you’ve done so much for JDRF, maybe come to us for one year’.

But I always go back to my original promise I told Jimmy and David, as long as you have diabetes, we will do this. I committed to them, and they committed to me.  Sadly, there is growth in the T1D community, so we can’t stop now, we mustn’t stop!

Our fundraising takes up to 10 months of the year, it’s constant work. I take the month of July off after the Walk. In August, we send out really amazing thank you letters to our sponsors. Then, the process starts again in September, October to come up with the next theme, the slogans, gifts, and the graphics, to keep the momentum going. (We have a thought for 2025 😉)

We will keep going until the day we have cures for T1D, and I have kept my promise to Jimmy and David.

If you would like to support Viva Las Curas please follow this link: https://jdrf.akaraisin.com/ui/jdrfwalk2024/p/Suzanne

To participate in or volunteer for the “JDRF Walk to Cure Diabetes”: https://jdrfwalk.ca/

To receive our “Viva Las Curas” sponsor letter package, please email: Suzanne@suzannereislerlitwin.com

Update – May 9, 2024

JDRF Canada has been clarifying elements of Bill C-64 – National Pharmacare Act with the government and we wanted to share what we’ve learned. We will continue to update as we learn more and share with our T1D community and stakeholders:

Frequently Asked Questions

Q: If I currently have private health insurance that covers insulins NOT on the national pharmacare list, will I still be covered for those?
A: Yes, the national pharmacare plan will NOT replace existing private or public insurance coverage. It is meant to be additive.

Q: If I am currently on a public provincial plan that covers insulins NOT on the national pharmacare list, will I still be covered for those?
A: Yes, the national pharmacare plan will NOT replace existing public or private insurance coverage. It is meant to be additive.

Q: If private and public insurance will NOT be replaced by national pharmacare, what is the benefit of a new pharmacare program?
A: The national pharmacare plan will potentially augment existing plans. It can also benefit those who have a co-pay with private insurance and require an insulin on the pharmacare list.

Q: If I have private or public insurance and I am using an insulin on the national pharmacare list, who will pay for it?
A: If you are using an insulin on the national pharmacare list, following agreement with Provinces and Territories, the national pharmacare plan will be the first and single payer of those.

Q: Will the national pharmacare insulin list be the same across all provinces and territories?
A: The list provided is for discussion with Provinces and Territories for specific coverage within that Province and Territory. There may be some differences across provinces, depending on what is negotiated in agreements between provinces and territories and the federal government.

Q: Will my device be covered under the diabetes devices and supplies fund?
A: The federal government is consulting with province, territories, and stakeholders to identify gaps in coverage to focus on related to the special devices fund. More information will be provided following those discussions.

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March 8, 2024

The last week of February 2024, JDRF Canada staff joined Health Minister Mark Holland in Ottawa as the federal government officially announced the tabling of a framework for a National Pharmacare plan (Bill C-64). This is the first major step towards a national universal pharmacare plan for Canada and a historic milestone for all Canadians living with type 1 diabetes (T1D) as the government announced that one of the first drugs that will be covered is insulin. The announcement also included a specific intention from the government to provide universal, single-payer coverage for diabetes devices.

While this is all good news for Canada’s T1D community, families hoping to take advantage of this coverage will have to wait as several steps must take place before pharmacare gets implemented.

Now that this legislation is tabled, what happens next?

Legislative Process

Bills (like Bill C-64, An Act respecting pharmacare) are proposed laws (not in effect) and must be introduced in either the House of Commons or the Senate. Like all bills under Canadian federal law, Bill C-64 (Pharmacare Act) must follow the legislative process of debate, review, and voting before officially becoming law.

1. Tabled on February 29, 2024 Bill C-64 entered and completed the first stage of this process on the same day. Known as first reading, the bill was formally tabled in the House of Commons.
2. A closer examination and debate over the principles of the bill will then take place during second reading, culminating in parliamentarians voting on whether the bill continues the process.
3. Should that vote succeed, the bill is then sent to the committee stage where a smaller group of parliamentarians will study the bill in detail, section-by-section, and often inviting government officials and/or experts (sometimes even advocates) as witnesses, and vote on amendments before delivering its findings in a report back to the chamber.
4. At the report stage, parliamentarians can debate on the amendments from committee or suggest new changes to the bill before it becomes finalized in the next stage.
5. At third reading, parliamentarians debate and vote on the final form of the bill. If the bill fails this vote or if a decision is not made before a session of Parliament ends, the bill stops going through the legislative process and is officially lost. Should the bill pass the vote at third reading, it is then sent to the Senate where it must succeed at every stage of the process again (from first reading to third reading) before receiving Royal Assent.
6. Once the bill has passed through the House of Commons and the Senate in identical form, the bill is given to the Governor General for Royal Assent and at that point it officially becomes law.

For more information on the legislative process, please visit: https://learn.parl.ca/understanding-comprendre/en/how-parliament-works/how-a-bill-becomes-a-law/

Provinces and Territories

Despite the contents of the bill, provincial and territorial governments are still responsible for the management, organization, and delivery of health care services in Canada. Should Bill C-64 pass the legislative process and receive royal assent, the federal government then has to work with willing provinces and territories (PTs) to implement coverage for specific diabetes medications through bilateral agreements, per the legislation.

Funding will augment, rather than replace, existing PT spending on public drug benefit programs. The governments of each PT must negotiate and enter into an agreement with the federal government before national pharmacare can be expected to roll out.

As the Bill and pharmacare itself are still in early stages, it is yet to be determined what would happen with PTs that elect not to participate in the program. Following the news of a reached agreement between the federal Liberals and NDP on national pharmacare, media has reported that the governments in Alberta and Quebec have announced their intention to opt out of this plan. The Ontario government also has not committed to a national pharmacare plan and has opted to assess the details first. While compensation is on the table, further discussions are expected to take place in the coming weeks now that the Bill has been tabled and its contents made public.

What do we know right now?

If passed, bill C-64 will ensure that following agreement with provinces and territories, people living with T1D in Canada will have access to insulin. Insulin can cost in the range of $900-$1,700 per year per individual, depending on the type and dosage required.

The Government will be launching discussions with PT on providing universal, single-payer coverage based on this list of diabetes drugs and insulins:

Drug Class	Brand Names	Generic Names
Combination Formulations	Synjardy	Empagliflozin & metformin
	Jentadueto	Linagliptin & metformin
	Komboglyze	Saxagliptin & metformin
Insulins	Trurapi, Kirsty	Aspart biosimilar
	Apidra	Glulisine
	Admelog	Lispro biosimilar
	Humulin R, Novolin ge Toronto	Regular, Human
	Entuzity	Concentrated Regular, Human
	Hypurin Regular Insulin Pure	Pork regular insulin
	Hypurin Nph Insulin Isophane Pork	Insulin Isophane, Pork Pure
	Humulin-N, Novolin GE NPH	Isophane Human, NPH
	Levemir	Detemir
	Basaglar	Glargine biosimilar
	Semglee	Glargine biosimilar
	Humulin 30/70, Novolin 30/70	Reg-Isophane, NPH Human
Insulin Secretagogues	Diamicron MR	Gliclazide
		Glyburide
Biguanides	Glucophage	Metformin
SGLT2 Inhibitors	Forxiga	Dapagliflozin

Separate from Bill C-64, the federal government is announcing its intention to establish a fund to support access to diabetes devices and supplies (such as continuous glucose monitors). Further details regarding this fund will be provided following discussions with PT partners, who will be essential partners to the roll out.

Next Steps

Bill C-64 is still in its early stages, and we expect it to continue to evolve and develop as the government consults with provinces, territories, Indigenous peoples, and other partners and stakeholders. As it makes its way through the House of Commons and then the Senate, you can read the debates and follow its legislative process on the federal government’s website here.

In its current state of the bill at first reading, should the bill receive Royal Assent:

• The Health Minister will establish a committee of experts within thirty days that will make recommendations concerning the options for operating and financing a national, universal, single-payer prescription drug insurance plan.
• Ministerial outreach will commence on next steps, including discussions with provinces and territories regarding bilateral agreements.-
• The Health Minister will request that within one year on which this Act receives royal assent, the Canadian Drug Agency:
  • Prepare a list of essential prescription drugs and related products to inform the development of a national formulary
  • Develop a national bulk purchasing strategy

What is JDRF Canada’s role?

Our work is not done. We will still have a role to play in advocating to ensure that the right list of essential type 1 diabetes devices and treatments are part of the national formulary, as well as ensuring the special fund for provinces on devices does provide equitable and affordable access. Patient choice will be paramount in our advocacy strategy around pharmacare.

For more information:
• Government Backgrounder: https://www.canada.ca/en/health-canada/news/2024/02/universal-access-to-diabetes-medications-and-diabetes-device-fund-for-devices-and-supplies.html
• JDRF News Release: https://jdrf.ca/news/canadians-living-with-type-1-diabetes-will-have-improved-access-to-the-treatments-and-devices-they-need-through-a-new-national-pharmacare-program/

Alison Hunt is celebrating her 28^th DiaVersary by walking 28km to raise funds for JDRF and T1D research

I was born and raised in Sudbury, Ontario and moved to Ottawa, Ontario in 2010 to start my undergraduate degree. I graduated with an Honours Bachelor of Social Sciences in International Development and Globalization from the University of Ottawa in 2014, and stayed in Ottawa where I currently reside with my husband J-F and our one-year-old Doberman, Rogue. In my spare time I enjoy travelling, going to sporting events and concerts, baking, playing board games with friends, and walking and snuggling with my dog!

A DiaVersary is the day that you were first diagnosed with type 1 diabetes (T1D). Can you tell us a little more about what you remember from that day and why you have chosen to make it a positive with this fundraiser?

I was diagnosed with T1D in August 1996, a couple of weeks before starting my first year of school. Having just turned four years old, I don’t remember much about my hospital stay when I was initially diagnosed. I do remember my older brother coming to visit me in the hospital and playing a Space Jam arcade game in the hospital’s playroom, and going for walks along Ramsey Lake where I painted rocks.

I also remember that by the time I left the hospital, I had quite the collection of finger puppets knit by hospital volunteers, which served as a welcome distraction from the many finger pricks (blood tests to test blood glucose levels)!

My mom learned to administer needles on an orange and counting carbohydrates was more challenging back then as not all food items had nutrition labels like most do now. Being an avid dog lover for as long as I can remember, one of my fondest post-diagnosis memories was receiving an enormous stuffed animal dog from the owner of my dad’s place of work, which I at first thought was real, and later named Mutsy.

Growing up with T1D I played numerous sports including soccer, tennis, rowing, dance, horseback riding, swimming, and badminton, enjoyed sleepovers and birthday parties with friends, and went on many school field trips and family trips. My family never let my T1D get in the way of enjoying all the things that a child without T1D would enjoy – it just became our new life routine, and I owe the positive attitude I have around T1D today to them. While it took a lot more planning, particularly around insulin dosing and carbohydrate counting, they never let that stop me from trying new things or making new memories.

What changes have you seen in T1D management since your first ‘DiaVersary’?

I was on multiple daily injections from 1996 until 2016 when I switched to an insulin pump (Animas and later Tandem) and not long after, started on a continuous glucose monitor (CGM) (Dexcom).

Having a CGM truly changed my life as I had developed hypoglycemia-related anxiety by adolescence, and, as a result, chose to miss out on activities as well as keep my blood glucose levels a bit higher than they should have been in an effort to prevent lows. I now have the best control I’ve ever had, but it is not solely because of these medical devices.

If I could teach the public one thing about T1D, I would want them to know that while diabetes technology has come a long way and has definitely facilitated some aspects of diabetes management, the onus for management still lies on the individual with T1D, and it is not as simple as counting carbohydrates and taking insulin.

I owe my great diabetes control to my unrelenting hard work, perseverance, and dedication, as do many other T1Ds – all things I have learned to take great pride in. While some days it’s easy to think, “Why me?”, I’m a firm believer in making the most of the cards you’ve been dealt. As a result, I’ve made the conscious decision to prioritize my health in order to ensure I have the lowest chance of developing complications from things that are within my control. I know that I am the most self-disciplined, patient, and resilient version of myself as a result of my diagnosis and for that I am very grateful.

What has fundraising for JDRF meant to you personally?

T1D is a very isolating condition – you are constantly counting carbohydrates, treating lows, reviewing your Dexcom graphs for patterns, bolusing (insulin administration) for food, correcting highs, planning and making adjustments for exercise, experiencing many sleep deprived nights, coping with the stress of it all…the list goes on. There are truly no breaks – it is on your mind 24/7, 365 days a year. At the same time, it is also a very invisible condition as you likely wouldn’t know someone has it unless you know what an insulin pump or continuous glucose monitor is, and you can visibly see it (or if you see an adult chugging a juice box and know what that means!!).

Fundraising for JDRF makes me feel incredibly loved and supported by all my friends and family who either donate, join my team and walk with me, or even reach out with a kind message of support. It always reminds me that I am not alone in this fight, however isolating it may feel at times, and for that I am so appreciative. I know that I am also greatly benefiting from the investments in research that are being made as a result of the funds raised. 

In honour of my 25th “diaversary”, I decided to walk 25KM over two days, and did this again the following year, walking 26KM. I took the year off in 2023 as I was busy preparing for our wedding but am once again participating in the JDRF Walk to Cure Diabetes this year and will be walking 28KM over two days in honour of my 28th “diaversary” in August. I hope to continue doing this for many years to come.

What are your hopes for the future?

I am not certain that we will turn type one into type none in my lifetime, but I hope T1Ds like myself will continue to benefit from advances in technology – things such as being able to give a bolus from your cell phone (making dress-wearing a lot easier!), more advancements to closed-loop systems, and even smaller and longer lasting CGM sensors. I also hope that there will be increased public education around T1D, which is so commonly mistaken for T2D.

I spent many years feeling ashamed of my diagnosis and often tried to hide my condition because I never wanted to stand out. But as I grew older, I gained more confidence and my mindset changed from wanting to hide to wanting to educate and inspire others, and I hope that reading my story has done just that. 

Alison is celebrating her DiaVersary through JDRF’s Fundraise Your Way program, that lets people fundraise in ways that are meaningful to them. To learn more about her fundraiser: https://jdrf.akaraisin.com/ui/jdrfwalk2024/p/ahuntT1D