Thursday 23 October 2014

Toronto and Virtual Support Group and Info Session - 2014

On Tuesday, October 7, 2014 Answering TTP Foundation held its annual Toronto and Virtual Support Group and Info Session. This meeting was the third time the Foundation was able to integrate a virtual participation option that allowed participants from around the globe to use their telephone and computer to participate and listen in.

The Support Group and Information Session followed a simple format that engaged both in-person participants and those who joined virtually by calling in.

CLICK HERE to read our blog about TMAs. 
Dr. William Clark

We owe a big thanks to Dr. William Clark for his pre-recorded presentation regarding Thrombotic Microangiopathy (TMA). Dr. William Clark is a professor of Medicine at the University of Western and a Physician at the London Health Sciences Centre. Dr. Clark is actively participating in research in the area of TTP and the Foundation is excited to be co-funding his current research project entitled Long-Term Vascular Outcomes of Idiopathic Thrombotic Microangiopathy Treated with Plasma Exchange.

Dr. Clark’s presentation was very thorough and discussed the difficulties faced by physicians when diagnosing patients with a specific TMA, as many TMA’s present similarly. He went into depth on several TMA’s and outlined the commonly used treatments for each. Participants listened to and watched the pre-recorded presentation, after which Dr. Clark was able to join in via phone to answer any questions the participants had with regards to the presentation, as well as general questions about TTP. To watch Dr. Clark’s presentation please click on the link below.

CLICK HERE to watch the video. 
Following the presentation portion of the evening, Diana Hermosa, a local patient who was able to attend in person, helped to break the ice for the breakout groups by sharing her TTP experience with everyone. Diana was diagnosed with TTP in November 2013 and has shared her personal experience with the Foundation officially; her entire story can be found HERE. Thank you Diana for helping us kick off the breakout group’s − your story inspired others to share theirs!

The breakout groups offered all participants, in person and virtually, a unique opportunity to share their experience with other TTP patients, supporters and nurses who participated in the evening.

Sherri Sullivan, Vice Chair of the Foundation and Director of the Foundation’s Patient Advisory Board (PAB), presented an update from the Foundation, which included information on the various initiatives, patient support and outreach programs the Foundation has been hard at work on. Below are a few of the exciting updates:

  • Medical Advisory Network (MAN) – has been established to provide support to other medical professionals who may have a challenging case of TTP, to allow for collaboration. 
  • Translation - of our trusted TTP Patient and Supporter Information Brochures – in French, Italian, Portuguese, Simplified Chinese, Russian and Punjabi. English and French versions are available in hard copy free-of-charge; other languages are available for free download HERE. 
  • TTP Awareness Hats - have been created and are given to patients and supporters who share their stories with the Foundation officially on our website. 
  • Research - The Foundation is currently funding 4 research grants! To date, the Foundation has committed $647,879 to research grants through 2016. 
She also took the opportunity to announce the Foundation’s first TTP Stakeholder Collaboration Meeting!

Please plan to join us in June 2015*, in Toronto, ON. The Foundation is excited to announce that plans are well underway for our first TTP Stakeholder Collaboration Meeting. This two-part event will take place on two dates* (between June 20 and June 28, 2015), with each date having a unique focus and objective. Part one of the meeting will engage physicians and research professionals to discuss best treatment practices and will open the doors for future collaboration aimed at effective TTP research. Part two will be dedicated to TTP patients, providing opportunities for feedback that will help the Foundation to develop a Comprehensive Care document. It is our hope that this meeting will help to strengthen the Foundation’s voice and community. A limited number of travel scholarships will be available to patients on a first-come, first-served basis. *Exact dates to be announced. The Foundation is working to align the Stakeholder Collaboration Meeting with the International Society on Thrombosis and Haemostasis Conference.

Thank you to all who participated!

Are you looking for a TTP Support Group in your area? Why not organize one? The Foundation can help you with this and Support Groups are a great way to reach out to your local community to help meet others with TTP and their supporters! Your event doesn’t have to be a large-scale meeting; coffee shops are sometimes the best settings for the first event in an area!

Learn how we can help you to organize a support group in your area, so that you and other TTP patients and supporters can benefit from this type of support!

If you don’t, who will?

CLICK HERE for more information.

Friday 10 October 2014

OIAA Golf Tournament Donates to Answering TTP Foundation

The below post was submitted by Marie Dimech, an Operational Volunteer of the Answering TTP Foundation. 

"On September 10, 2014, Sydney Kodatsky, the Executive Director of the Answering TTP Foundation, asked me if I would consider attending an event on behalf of the Foundation.

As a volunteer, I was flattered to be asked to represent the Foundation at an event, but also a little apprehensive - what would be expected of me? Would I need to make a speech in front of a crowd? These are questions that swirled in my brain, as I have never been very comfortable speaking in public. Sydney quickly put my worries at ease; she told me that the Foundation had been contacted by the President of the Ontario Insurance Adjuster Association (“OIAA”) in the Niagara Region and requested our presence at their upcoming Annual Golf Tournament because we had been selected as the beneficiary of proceeds from their 2014 event. They asked that someone from the Foundation attend the dinner and perhaps say a little something on behalf of the foundation, when accepting the cheque. Sydney assured me that I would just need to say a few words, written and provided to me ahead of the event so I could prepare, thanking the donors and attendees, while also giving them some information about TTP and the Foundation. Easy Peasy!

This is a first for the Answering TTP Foundation, so of course we were thrilled to hear that the Foundation was this year’s charity of choice for the OIAA Golf Tournament; how could I turn down this opportunity! I did however, have to consider a couple of things before accepting this invitation: (1) It was going to take me two hours during Friday’s rush hour traffic to reach the event and, (2) the event fell on the night before the Walk to Answer TTP Together, the Foundation’s global fundraiser/awareness event for which I am Chair. I could easily have passed on the invite, but felt very strongly that it was important to everyone involved that a representative from the Foundation be in attendance. So of course, I happily accepted. 

On September 19th, Taryn equipped me with a hard copy of my “speech”, awareness materials to hand out, and with a smile, she wished me good luck.

I managed to recruit Janice, a fellow volunteer, to accompany me on this road trip. We arrived at the Sparrow Lakes Golf Course in Welland at 6:00 p.m., and were welcomed with open arms by Katie, the President of the OIAA and her team of organizers. Katie’s cheerful and friendly greeting put any lingering apprehension and anxiety to rest right away. She escorted us to her table where we met fellow organizers and enjoyed a delicious buffet dinner.

Katie proceeded to make the announcement that Answering TTP Foundation was the charity they had chosen as the beneficiary of their 2014 golf tournament and how TTP had recently touched this business’s community, thus making the cause near and dear to them. Katie’s boss was diagnosed with TTP in 2014, and as a result of blood clots floating in his brain he suffered a stroke.

Janice, Pino, Marie, Rita & Katie (from left) 
Katie presented me with the proceeds, over $2,000 that will go towards the Foundation’s TTP education, support and research initiatives and then asked me to say a few words. Throughout the evening there was a hum of chatter but when I started speaking, you could hear a pin drop in that room. People were keenly focused on learning about TTP and the Foundation.

I was fortunate enough to meet Katie’s boss that evening along with his wife, the woman who has been his rock. I was happy to hear that the hospital where he underwent his treatment provided him with education materials that were obtained from the Foundation, and in particular, the New Patient Brochure (it’s reassuring to know that the hard work involved in preparing and distributing these education materials is paying off). We spent considerable time just listening to their struggles, disappointments, uncertainties, achievements, concerns, determination and most of all, their positive outlook. They are already brainstorming ideas of how they can support “give back” by hosting a fundraiser to raise more funds for education and research.

We could easily have spent hours talking that night, but as the next event requiring my attention was only 12 hours away, it was time for us to hit the road. As Janice and I chatted on our drive home that night, we were inspired by the courage and strength TTP patients and their supporters exhibit.

One thing is for sure; I will be honored to represent the Answering TTP Foundation the next time that opportunity presents itself."

Why not look at running the Foundation’s next third-party fundraiser? Check out the website HERE for lots of great ideas for events that you can organize and run from the comfort of your local community! Third-party events are vital to the Foundation’s growth, as they not only help to raise life-saving TTP Awareness, but they also raise life-changing funds for TTP support, education and research! No event is too small or too great!

We can’t wait to help you with your event!