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.