Newest Partners for Life Team Member Gives Blood

First Time Blood Donation --- Sean K., Partners for Life Team

I recently joined the Answering TTP Foundation's Partners for Life Team with Canadian Blood Services. This is a tale of my very first time donating blood. 

I must tell you that I am not a fan of needles, but my worries were put to rest as soon as I arrived at the donation site. The staff was most welcoming and upon learning I was a first-timer, the staff took extra care to make me feel as comfortable as possible. At the first of the four stations, a nurse took a small sample from my finger to test my iron levels, then it was onto station two. This is where I filled out a questionnaire, which took about two minutes.

Now it was onto the third station, the donation station. After putting the needle in my arm, it only took  about fifteen minutes to fill the bag up with my plasma. I was expecting to feel different somehow after giving my blood, but was pleasantly surprised to find that I felt absolutely normal.

Finally it was on to station four, my favorite as it turned out. This is where you get have delicious cookies and juice for a quick refuel before heading home.

I figure that it’s more than a fair trade for such a small amount of my time to make a big difference.

Sean K.  

Carin' 4 Karen

Derek, Karen, Wendy, Syd (from left to right)

On August 11, 2012 Karen's husband (Derek Lahey) and best friend (Wendy Hallgrimson) surprised her with a benefit concert to recognize her battle with TTP.

The all ages event featured The Fighting Hellfish, Vesely Couture and Los Luchadors Tamboreros (Derek's band). The bands generously donated their time to entertain the crowd of supporters at the West End Cultural Centre in Winnipeg, Manitoba.

TTP Info Card (front and back)

When asked why Derek (Karen's husband) and Wendy (Karen's best friend) decided to spend months organizing this fabulous event, they both remarked on the need for awareness for TTP to save lives. So many TTP symptoms can be explained away by more common non-serious conditions. Karen's fatigue and nose bleeds symptoms did not seem alarming at the time. Her exhaustion could be easily explained away by having a new baby at home. Her nose bleeds were not new to her, as she had experienced them in the past.

All event participants received the new TTP info card and were encouraged share it with their friends. The Foundation also supplied awareness bracelets and ribbons for the event. Also available for sale were buttons designed by the event organizers.

Ribbons, Bracelets & Buttons

The concert marked the first entirely 3rd party organized fundraising event to benefit Answering TTP Foundation. I was thrilled to attend to share information about TTP and the Foundation support, education, advocacy and research initiatives. It was amazing to see the Answering TTP Foundation tools being used by others to engage their local community to raise awareness and funds for TTP.

We hope that the Carin' 4 Karen event will become an annual fundraising event! We wish Derek and Wendy the best of  luck with the follow up Winnipeg blood drive on September 8 from 8am - 2pm at the Canadian Blood Services building, 777 William Ave. Make your appointment today at www.blood.ca and register for our Partners for Life team!

Registration & Silent Auction Tables

For more information on how to organize an event to benefit Answering TTP Foundation, please visit www.AnsweringTTP.org.

Written by Sydney Kodatsky.

Honouring Our Lifeblood

On June 7, 2012 I had the privilege to share my story in thanks to milestone blood donors, partners and volunteers at the York Region Canadian Blood Services (CBS) Honoring Our Lifeblood (HOL) event. As I looked out into the audience I knew that there was a high probability that 1 of the 600 blood donors that helped save my life was in the room. For sure some of the blood collected was used to save someone from our TTP community.


My experience with the Answering TTP Foundation's Partners for Life (PFL) program has taught me that recruiting blood donors is tough. According to the CBS PFL toolkit more than 80% of Canadians believe that there is a shortage of blood in Canada, but less than 4% of eligible Canadians donate blood. I never thought it would be hard to ask people to sacrifice an hour every 56 days to give something that can help save a life. Is it a fear of needles that scares people away? Maybe the sacrifice of time?

I only gave blood a few times before I found myself diagnosed with TTP and in desperate need of life saving blood product. Probably one of the reasons that I am so dedicated to sharing my story with TTP to raise awareness for the need for blood now, is that I feel guilt for not giving blood while I could. I simply didn't understand the impact that my gift could have had to help save a life. Now I do!

People are motivated to give blood for many reasons and I was honored to be a part of recognizing the 9, 924 blood donors reaching 50th, 100th and 150th donations. Every precious gift of blood has been used for someone in need and I was honored to meet these heroes!

Sydney Kodatsky, Charmaine Lodge (Master of Ceremonies, Director, Donor & Clinic Services, Central Ontario, CBS) and Jeannie Skeggs (Coordinator, Volunteer Resources, CBS)

Written by Sydney Kodatsky.

2012 Chance & Change Game Night

It was anything but an ordinary Saturday night. 

The mission was simple - to raise over $100,000 for Answering TTP (Thrombotic Thrombocytopenic Purpura) Foundation.   The ammunition was plentiful.  Poker, blackjack, and roulette tables were supplemented by and a host of exciting silent auction items including theatre tickets, pet-sitting services, and oh, yes - trips to Portugal, Las Vegas, and Casino Rama!   However, there was a snag.   The rainclouds overhead collected and threatened to spill down onto the front and back yards of the Kodatsky home, where Sydney & Alec Kodatsky have hosted the event for the past three years. 

But perseverance and well-placed tents prevailed!  For the first time, the Chance & Change Game Night boasted a Master of Ceremonies, Elaine Lui, who runs her incredibly popular website laineygossip.com and, of course, is a reporter on CTV's etalk.  Better known as Lainey, she won the crowd over with her banter, humour, impersonations of a lounge singer, and sincere commitment to raising awareness of rare diseases.

The night began, and bidding and gambling were well underway.   Lainey put her money where her mouth was, offering to donate hundreds of dollars - if anyone could beat her at Texas Hold 'Em.  Brave partygoers took her up on it (Lainey's a well-known gambling aficionado) while the rest of the group perused the bid sheets, strategizing and waiting to land the perfect jewellery, set of DVDs or basket of cookies. 

 

As the night grew to a close, the guests debated whether they'd preferred the mini grilled-cheeses or lamb chops that had passed their way, and prepared for their final bids -- and to see who would win the raffle draw for the ultimate prizes - including a Land Rover weekend and a Las Vegas vacation.   When the tickets had been pulled and the bids had been tallied, Chair Tammy Robertson announced the great news - we did it! Over $100,000 raised for TTP in just a few hours!  The group celebrated, Lainey happily donated $500 to the total (but didn't want to admit she'd actually lost the game - it's a matter of pride!)  and guests grooved to Way2Social as the night began to wrap up.  

 

Rain? Doesn't bother us.  Huge donation goal? No sweat.  Fights over the last grilled cheese? (I can't swear to it, but I bet it happened.)   Plans for next year's Chance & Change night are already underway, and we can only go up from here. 

 

Written by Duana Taha.

Roadshow: Saint John, New Brunswick

On Wednesday May 23, 2012 I found myself on a puddle jumper plane on my way to Saint John, New Brunswick.  No room for a flight attendant or a bathroom! 

Shortly before 10am I arrived at the Canadian Blood Services (CBS) building in Saint John located just across the street (but down a giant slope) from the TTP treatment hospital (Saint John Regional Hospital). There I met with Michelle Thibodeau, Communications Specialist - Atlantic CBS, who helped to organize our involvement in the first Passion for Plasma blood drive and also arranged a room for a patient support group meeting to follow the same day.

Posing with Lori Carle, Wave Radio host.

 Saint John is one of a few blood donation clinics that is equipped to collect blood plasma donations from donors. I was thrilled to be part of the first Passion for Plasma blood drive event to recognize plasma donors and encourage not only plasma donation but whole blood donation as well. Donations of either method result in life saving blood products required for TTP treatment. I was joined by 4 other (more local) TTP patients. Together we educated donors about TTP and encouraged participants to join the Answering TTP Foundation'sCanadian Blood Services (CBS) Partner’s for Life (PFL) team. 

Posing with Plasma Donor

Joining our PFL team enables us to thank donors regularly via email communication and keep them engaged by updating them with new patient stories. Details of how to join our Partner's for Life team are available by clicking here. 


This Passion for Plasma blood drive resulted in local media coverage for TTP:

• http://country94news.blogspot.ca/2012/05/celebrating-plasma-donors.html 
• http://country94news.blogspot.ca/2012/05/wave-announcer-makes-her-100th-plasma.html
• CHSJ and The Wave hourly news coverage
• CBS Facebook page http://www.facebook.com/media/set/?set=a.367678036626756.84114.251514814909746&type=3

TTP Support Group & Info Session Participants

 

The first Saint John TTP Support Group & Info Session was a wild success. Dr. Comeau (Hematologist Saint John Regional Hospital) gave an overview on TTP and answered general questions for the group. Following his presentation I shared my story to help warm the room for break out groups to enable participants to get to know each other. 

Catherine Cook Knits to Raise funds for TTP

To wrap up the support group, Catherine Cook bravely shared her TTP experience with TTP. Her story is uploaded to the AnsweringTTP.org website (click here). Catherine has also been an avid fundraiser even while in recovery. She has knitted booties, dish clothes and cup warmers to contribute funds to benefit Answering TTP Foundation. With each sale she includes information about TTP to help raise awareness.

Many thanks to Arlene, local Apheresis nurse, for her support in organizing this successful support session. The group is already looking forward to another meeting next year. In the fall, the group plans to participate in the fall Walk to Answer TTP Together (click here to register today!).

Roadshow: Halifax, Nova Scotia

On Tuesday May 22, 2012 I took an early morning flight to kick off the Maritime Roadshow in Halifax.  It was to be a packed day. I met with Answering TTP Community members for a lunch support meeting, medical staff in the early afternoon, and then I travelled to Kentville for a CBS Honoring Our Lifeblood (HOL) event that evening.

(Left to right) Syd, Teela &Mark

I met Teela, Teela's mom and Mark at Mexicali Rosas around the corner from the local Halifax TTP treatment centre (QEII) for lunch. Over nachos and salad we shared our TTP experiences. Both Teela and Mark have shared their stories at AnsweringTTP.org and they both recognize the value of local TTP support groups. With their help we will be developing a local Halifax TTP support group. 

 

New Patient Brochure

After lunch Mark generously volunteered to accompany me to the TTP treatment room at QEII. We met with a couple of the ever-friendly Apheresis staff and I gave them some of our New Patient Brochures to ensure that they had adequate supply to distribute to newly diagnosed patients. This piece provides new patients and their supporters an easy-to-understand description of TTP and information about accessing Answering TTP Foundation's support programs.

(Left to right) Mark, Syd, Dr. Sue Robinson

After killing some time at a local coffee house, Mark and I headed to my previously arranged meeting with Dr. Sue Robinson who treats some of the Halifax TTP patients. We met in a room in the Bathune building of the hospital  - perfect for the first TTP support group session. Dr. Robinson was enthusiastic about Answering TTP initiatives and agreed to help us organize the first Halifax TTP support group session. She also committed to distributing the brochure for medical professionals to the other hematologists treating or having an interest in TTP research.

Brochure for Medical Professionals

 

Next Mark and I travelled with Paul Doucet, Communications Specialist - Atlantic Region CBS, to Kentville for their annual HOL event. Mark did a fantastic job sharing his story in thanks to blood donors receiving awards for reaching 50, 100 and 150 threshold blood donations. Mark has agreed to work with CBS in the future to help engage new donors and raise awareness for TTP in the Halifax area. Below is a photo of myself, Mark and a blood donating duo who together have donated over 150 units of blood for those in need. Mark and I were honoured to meet and talk to them about why they donate.

Standing with a blood donation duo!

Written by Sydney Kodatsky.

Answering TTP Foundation attends the 1st ASFA TTP Consensus Conference

The  American Society for Apheresis  (ASFA) held their 1st TTP Consensus Conference on April 10, 2012 in Atlanta in conjunction with the 2012 ASFA Annual Meeting. The consensus conference brought over 100 TTP treatment professionals together with the aim to help standardize the care for all TTP patients. 

The speaker panel included both US based physicians (Dr. Evan Sadler , Dr. H. Tsai,  Dr. James George, Dr. Ravindra Sarode and Dr. Thomas Raife) and international physicians (Dr. Johanna Kremer Hovinga from Switzerland and Dr. Gail Rock from Canada). Each presenter outlined topics for consensus which sparked additional comment and discussion amongst the group. We look forward to reading journal articles published as a result of this collaborative meeting.

I was excited to represent the Foundation and our Answering TTP Community at the meeting.  During break I introduced myself and handed out our new brochure for medical professionals to as many participants as possible. Connecting with these medical professionals and encouraging them pass our support information along to their patients will not only connect more patients with our support initiatives, but grow the credibility of our unified voice of action.


Written by Sydney Kodatsky.

Rare Disease Day 2012

February 29, 2012 marked the 5^th international Rare Disease Day. Hundreds of patient organizations from more than 40 countries worldwide converged around the slogan “Rare but Strong Together” to strengthen one voice of patients to: (1) give hope and information to patients, (2) bring stakeholders closer together, (3) coordinate policy actions in different countries, and (4) get equity in access to care and treatment (source: www.rarediseaseday.org).

It isn’t that rare to be rare. According to the Canadian Organization for Rare Disorders (CORD) 1 in 12 Canadians have a rare disorder. RareDiseaseDay.org reports that there are between 6,000 and 8,000 existing rare disorders. The definition of a rare disorder varies by country. In Europe a disorder is called rare when it afflicts less than 1 in 2,000 people. In the USA a disorder is rare when it afflicts fewer than 200,000 Americans at any given time. 

According to BeFair2Rare.com, Canada is the only developed country that does not have a rare disorder definition, nor a Federal Healthcare Policy that addresses this segment of the population. The BE FAIR 2 RARE™ campaign is aimed to encourage a national healthcare plan geared towards addressing the unique concerns of small patient populations. These concerns include:

• encouraging research where the patient population size would not support specialized research under standard business conditions that rely on large patient populations.
• establishing a reasonable approval process for new therapies since large randomized studies cannot be completed because there simply aren’t enough patients.
• obtaining a national funding commitment to provide access to treatments by reducing costs for pharmaceutical companies to supply treatments and subsidizing drugs. These drugs may mitigate irreversible complications or relapse that currently cost the healthcare system.

"It is vital we raise awareness of this important rare disease issue in Canada with both policymakers and the general population. We further ask that our government to continue to explore ways to support this NOT so rare segment of Canadian population as it seeks equality in the eyes of our healthcare system." – Simon Ibell, Be Fair 2 Rare™ campaign chair.

In addition to supporting CORD and BE FAIR 2 RARE™ activities to mark Rare Disease Day 2012, Answering TTP Foundation engaged patients and supporters to raise awareness for TTP and the need for blood donation via the 1^st Rare Disease Day TTP Blood drive. This initiative has grown our international base of blood donors, donating in honour of TTP, to 63 active members! Congratulations to all donors. A special thanks also to those who may not have been able to participate themselves, but rallied their personal networks to donate. More blood donors donating toward this program translates to more blood available for all in need, and more life-saving awareness for Thrombotic Thrombocytopenic Purpura (TTP). For more information about our ongoing blood drive click here.

University of Toronto Students from Delta Kappa Epsilon and Alpha Phi roll up their sleeves in support of Answering TTP Foundation's Rare Disease Day TTP Blood Drive.