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.

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 19^th, 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."

Are you involved with the Answering TTP Foundation yet?

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!

West Haven, CT Blood Drive

On July 22, 2014, Christine Carrion, a TTP survivor, held her first blood drive in honor of TTP in West Haven, CT.  Below, Christine shares why she decided to get involved and hold a blood drive, as well as what the blood drive meant to her:

“To begin the process, I wrote to the Red Cross with my interest of hosting a blood drive and attached my story – the story of how blood donation has saved my life. While I waited to hear back from the Red Cross, I also reached out to the Answering TTP Foundation and filled out their Blood Drive Form, to let them know what I was looking to do and to see how they could help me.

From there, things kind of just took off. The Red Cross worked with me to select a date, time and location for my drive and the Answering TTP Foundation helped to create flyers and spread the word to their community by posting my event on the front page of their website with a link to the flyer. The Answering TTP Foundation also sent us ribbons and info cards that we were able to hand out at the drive to help spread awareness for TTP.

We printed out lots of flyers that our family helped us distribute before the event. We also spread the word on Facebook and though local paper and radio.

The Red Cross had set up an electronic appointment book for the day and this made it really easy for people to make appointments so they knew when they needed to show up on the day of the drive. The week before the drive, there were 21 appointments and more people promising to show up on the day. The Red Cross estimated that 26 people would come out that day to donate.

My TTP patient match, found through the Foundation’s Patient Connect Program, even decided to make the trip with her family to take part in the drive as well! It was emotional and heartwarming to meet her for the first time in person. Our families grew close and now we all keep in touch and are planning our next get together!

On the day of the blood drive, my family, friends and the Red Cross set up for the drive. Family, friends, co-workers, teachers, and strangers all came to donate.  I think a lot people came out because it was a drive that was dedicated to someone in their own town. They were able to put a face to the importance of blood donation! At one point there was a two-hour wait to donate!

I was overwhelmed by all the help, love, and support I received for this event.  It meant so much to me to give back some of what I have taken and to truly understand how people that donate selflessly can help save another life. Everyone spoke of what patients with TTP go through, some took the handouts I had on the table with juice and snacks. All wished us luck and well wishes. 

By the event’s end, we had not received 26 donors but 36! 41 people came out that day to donate and 36 were viable donors.

I was approached by the Red Cross staff and told I had a very successful drive. I was also invited to make my drive an annual event!

I am glad to say that I now have something to look forward to in July, which happens to be the month I was diagnosed!"

To view all the pictures from Christine's Blood Drive Click Here to view our photo book. 

Interested in organizing your own Blood Drive? We can help! To get started visit our website Here!

What are you doing to prep for your 2014 Walk to Answer TTP Together?

It’s hard to believe that our 4^th Annual Walk to Answer TTP Together is just around the corner. On September 20, 2014, registered team and individual participants from around the globe will be lacing up their sneakers to Make Strides to Save Lives in the Walk to Answer TTP Together, walking in their communities for 2 hours to raise awareness and funds for TTP support, education and life-changing research!

This year, we talked to team “Cindy Moes” captain Melissa Angermeier about her participation in the 2014 Walk to Answer TTP. We wanted to know why drove her to register and what she and her team of walkers are doing to make this year’s Walk better than ever. Below is what she told us in a phone conversation.

Why are you walking in the 2014 Walk to Answer TTP Together?

“In March of 2011, our mother passed due to complications of TTP. We have registered to walk the last 2 years, this is our 3^rd year, because we want to do anything and everything we can to help support the TTP community. We know that had our mom been a survivor of TTP, she would have jumped right in and got involved with what ever she could to help the TTP community.”

What do you do to make your Walk special?

“We make our Walk fun and a family event! Our mom was an exciting person, always positive, always upbeat, and very energetic. So we make sure that our Walk captures her spirit by keeping it fun and upbeat and all about the need to raise awareness and funds for TTP. We also have a picnic after our Walk so that we can spend time together as a family, and my sister and I give out little gifts of thanks to the other participants for walking with us. One more way that we make our Walk special is by having a balloon release at the end to commemorate the memory of our beloved mom!” (Note from the Foundation: please make sure you check with your local bylaws before planning a balloon release)

 Is there anything you do before your Walk to raise awareness?

“We pin up flyers where ever we are able to and my sister and I try to attract the attention of local media, newspapers, radio stations, etc. This year my sister and I are going to be on a local radio station to talk about our walk. Here in South Dakota, not a lot of people know about TTP and we really do try to get the word out however we can. We even tried to book the local Blood Mobile to incorporate a blood donation into our Walk. Unfortunately it was already booked, so we know for next year to call early!”

As a 3 year participant in the Walk to Answer TTP Together, I am sure you know about our awards, are you aiming for one of three awards this year? If so, what are you doing to try to win?

“We are absolutely going for an award, the Spirit Award. As I mentioned earlier our Walk is about being positive and having fun, one of the ways we are keeping things upbeat and fun is by decorating our Walk route. We have cut out poster board into puzzle pieces to line our Walk route with and they each have a word written on it like “Hope”, “Emergency”, and the Foundation’s website to name a few. We found red and black knee-highs this year so some of the women walking will be wearing those. The boys walking get into the spirit too by spraying their hair red and white. We have tie-dyed t-shirts and tutus for the kids to wear and add puzzle pieces to their shirts as well. Finally and most importantly, we ALWAYS have pictures and pins that we carry and wear in memory of our mother, the reason we were touched by TTP.”

Do you have any advice for TTP community members who might be interested in Walking but are unsure about participating?

“Take a leap forward and just do it! We are a small community and we need to band together! The TTP community has become my family and helped me through the hard times I have faced since losing my mom. Participating in this Walk makes me feel closer to the community. There is nothing to lose by participating, only positive gain! By walking, you can help to raise life-saving awareness and funds for TTP in your local community. Our Walk is small but we are determined to spread awareness and be the voice for our mother and other patients and families affected by TTP.”

Didn't have a chance to register to participate in this year's Walk? You can still get involved and make a difference in the lives of those touched by TTP donating to a team or an individual who is participating!  No amount it too small or too great! Click Here to make a difference today!