Charlottetown Blood Drive 2014

On Friday, June 13, 2014, Pam Smith, a TTP survivor and active Answering TTP Foundation community member, held a blood drive in her community! 

20 units of whole blood were collected and 6 more people joined Answering TTP Foundation's Partners For Life team!

Below is a note from Pam about why she organized the blood drive and how easy it was! 

"With the help of Answering TTP Foundation's team in Toronto, who created posters and helped to promote the blood drive on the Foundation's Website and Facebook group. Organizing a blood drive in my community was an easy way to get involved and give back to the community!


I sent out e-mail messages to all of my friends and asked them to forward my request on to all of their friends and family. I put up posters around the city where I live, plus in 5 other communities within 50 miles of my city. I reached out to local radio stations to have my blood drive announced on their community bulletin boards and had a small article written up in a seniors magazine that comes out in the local newspaper. I also advertised my blood drive on my Facebook page. 


On the day of the drive the mother, sister and niece of my TTP friend from the UK joined me at the blood donation clinic to hand out information cards and ribbons (that were supplied by the Answering TTP Foundation) to donors. 

The staff at the donation clinic were awesome and even baked cookies to give to blood donors!

We live in a small Province but with a little bit of effort to advertise the event, I was able to attract 20 donors to participate that day!

Please help raise awareness for TTP and the need for blood drives!"

- Pam Smith

Thank you Pam for all of your hard work and dedication! 

Thinking about organizing a blood drive in your local community? It's easy and we are here to help! Visit our Blood Donation Page HERE to get started!

Attending the Ohio State University TTP/aHUS Research Program Support Group

At 5am on June 3, 2014 I, Sydney Kodatsky, set off, on what Google Maps calculated to be a 7 hour road trip, with my 1-year-old daughter and cousin from Toronto, Ontario to Columbus, Ohio. Plenty of time to make it to the support group session at 5pm, or so we thought. Turns out that traveling with a baby takes substantially more time. I was remiss to factor in the numerous stops to eat, change diapers, and of course to play... Add more time for pounding rain, accidents, construction and a dead car battery. It was a small miracle that we made it with an hour to spare! 

Google Maps Route - Toronto to Ohio

I was impressed to see about 40 people filling the classroom of Starling Loving Hall of Ohio State University. Patients and their families had traveled from as far away as New Mexico to attend. As a patient, I find that these support groups are an important component to patient well-being. I have found that these sessions help connect TTP patients, and their supporters, to others who truly have a mutual understanding of what it is to live with, or with someone who has, TTP.  

Group shot from support group.

Dr. Cataland welcomed everyone to the meeting and discussed the similarities and differences between aHUS and TTP (click here to learn more). A number of patients in attendance had been reclassified as having aHUS after an initial diagnosis of TTP.  Dr. Cataland also shared that the results of a study comparing the use of Prednisone vs. Cyclosporine together with Plasmapheresis will be released shortly. As a patient, who dreads the side of effects of Prednisone, I hope that Cyclosprine will be proven a good substitute for Prednisone in the treatment of TTP.

TTP Awareness Hat!

I was thrilled to share updates from the Foundation with the group about our support, education and research initiatives. People loved the new hats that we are giving to patients and supporters who officially share their stories with us (click here to learn more). The attendees were excited to learn about participating in the 2014 Walk to Answer TTP Together on September 20, 2014 (click here for more details). 

I also took the opportunity to emphasize the need for more TTP community members to actively get involved with the Foundation. We have grown and need more active support from the community. It is time! Whether you want to get involved with advocacy issues, have a bake-sale or gala, support others or lend your services in some other meaningful way (click here to find your fit).

It was a great trip and I hope to make it back in October for the more formal support group session that will be attended by a very special out-of-town TTP physician. Ensure you are registered for the Answering TTP Community (click here) so that we can send you the session information.

Joanie Totes

Early in 2014, Staci Rutherford, the daughter of a TTP patient, reached out the Answering TTP Foundation to share her mother’s story of TTP and her idea of how she could make a difference in the TTP community moving forward.

Below is Staci’s story of how and why she has decided to get involved!

Joanie Totes:  Raising TTP Awareness…one bag at a time™

Last spring, almost a week after Mother’s Day, my mother, who I affectionately called “Joanie”, was diagnosed with a rare, life-threatening autoimmune blood disorder, ThromboticThrombocytopenic Purpura (TTP).  She spent the entire summer in the hospital, undergoing treatment but, unfortunately, things took a turn for the worse.  

The service we had for Joanie was a joyous celebration of her life. Family and friends shared stories of how "fancy and fabulous" Joanie was. She always had extraordinary taste. Everyone laughed while quietly reminiscing on their own memories of Joanie. Joanie traveled and shopped around the world, and made friends everywhere she went.  Her beautiful smile and spirit could light up a room. I knew from the moment I was introduced to the Answering TTP Foundation that I wanted get involved to help raise awareness. While grieving the devastating, unexpected loss of my mother, I began brainstorming on what I could do to honor her.It had to be something that truly represented Joanie.

Joanie and I both loved accessories, specifically, statement jewelry, scarves, and handbags. I grew up shopping in her closet, so naturally I had began my own collection of handbags and accessories, which eventually turned into a business.  With a modest investment from Joanie, I started HandbagReport.com, an online store, and later, added a blog to report handbag trends and designers. Joanie was always my #1 supporter - we threw purse parties, traveled to trade shows and picked our favorite bags each month from the latest fashion magazines. 

One day, I had an “a-ha moment” and decided to create a line of handbags, Joanie Totes, in memory of Joanie, that would also raise awareness about TTP.  As my concept for Joanie Totes took shape, I came across the work of an incredibly talented fashion illustrator, Jennifer Lilya.  When I discovered her client list included Bloomingdale’s, Saks Fifth Avenue, Neiman Marcus, T.J. Maxx, Marshalls, and Sephora, I felt an instant connection because those were Joanie’s favorite stores.  I knew she would be the perfect person to bring my vision for Joanie Totes to life.  Once Jennifer and I designed the first Joanie Tote, it was manufactured in Los Angeles’ fashion district. 

The ‘Be Fancy & Fabulous’ Joanie Tote was launched on March 25, 2014, six months after Joanie went to paradise. The mission of Joanie Totes is to raise TTP awareness…one bag at a time.  On the 25th of every month, I honor Joanie and donate a portion of the sales to the Answering TTP Foundation to benefit patient support, education and research.  I am dedicated to helping the TTP community.  I also hope to inspire others to get involved and make a difference.  There is a huge sense of accomplishment in bringing my Joanie Totes idea to fruition.  Not only has it been a form of therapy, it supports a cause that is extremely close to my heart.  I am planning to design several new styles each season, with hopes of eventually expanding the line to other accessories. 

  

The ‘Be Fancy & Fabulous’ Joanie Tote is available at www.shop.handbagreport.com

Are you interested in getting involved and spreading awareness for TTP while also raising life-saving funds? Why not organize your own fundraiser. From Bake Sales, to Car Washes to Galas or Art Shows , every event makes a difference. Learn more at our website HERE.

Answering TTP Foundation at the Emergency Medicine Update Conference

On Thursday, May 8th and Friday, May 9th, 2014, our Charitable Programs Director, Taryn, manned the first ever AnsweringTTP Foundation booth at the North York General Emergency Medicine UpdateConference.

Why this conference? The Answering TTPFoundation was turned onto this conference as the “go to” conference for Emergency Room doctors, nurses and personnel in the Canada and other parts of the Globe. Since Thrombotic Thrombocytopenic Purpura (TTP) is considered a true medical emergency and many patients of TTP end up in the emergency room during a TTP episode, we felt it was important to raise awareness of TTP within this group. We also saw it as a great opportunity to raise awareness and help promote the NEW TTP Patient OrderSets, which we have been piloting across Canada over the last year.

On both days, we had the chance to meet a lot of Emergency Room doctors and nurses, most were from Canada but other came from the US and as far away as Saudi Arabia. Each doctor, nurse or hospital staff that came to our booth was given a copy of the TTP patient order set #1 and a TTP info card.

Are you interested in getting involved with Advocacy within the Answering TTP Foundation, with the possibility of attending these kinds of events? Visit our website to learn more about joining the Foundation’s Patient Advisory Board.

CORD Regional Workshop

On Thursday, May 1^st and Friday, May 2^nd, 2014, our Charitable Programs Director, Taryn, attended the Canadian Organization for Rare Disorders (CORD) Regional Workshop in Toronto, ON.  Beyond: Current and Evolving NEW Models for Access to Drugs and included presentations on Lifecycle Approach to Drug Development and Access, New Drugs: Orphan Drugs, Personalised Medicines and Biosimilars and Drug Review Process and Drug Plans to name a few.

If you have been following along with the Foundation’s blog, you might have seen that the Foundation is a member of CORD, which is the organization that is currently leading the charge in the creation, development and implementation of Canada’s Orphan Drug Regulatory Framework (to read more about the Foundation’s participation with CORD check out the blog posts A Day on the Hill or Answering TTP Foundation Attends CORD FallConference).

This regional workshop was no different then CORD’s usual larger scale conferences, in that both days were packed full of interesting and invaluable information.

Day 1 was dedicated to Health Technology Assessment and Beyond: Current and Evolving NEW Models for Access to Drugs and included presentations on Lifecycle Approach to Drug Development and Access, New Drugs: Orphan Drugs, Personalised Medicines and Biosimilars and Drug Review Process and Drug Plans to name a few.

Day 2 started with a Media Briefing introducing the Canadian Strategy for Rare Diseases by Durhane Wong-Rieger (CORD President) to Global TV, Sun News and News Talk 1010.  Two rare disease patients also spoke about living as a patient with a rare disease in Canada. Check out the media releaseand media fact documents.

After the media cleared out, David Lee from Health Canada spoke about Canada’s Orphan Drug Regulatory Framework and Vanessa’s Law. This was followed by 2 very lively panel discussions in the afternoon.

Toronto was just the first stop for CORD cross-country Regional Workshop Forum. Check out dates for the upcoming stops HERE at the CORD website.

Are you interested in getting involved with Advocacy within the Answering TTP Foundation, with the possibility of attending these kinds of events? Visit our website to learn more about joining the Foundation’s Patient Advisory Board.