Annie's Story

My name is Annie Maynard and I live in Peterborough, Ontario. I am 30 years old, a mother of two, a loving wife and I was diagnosed with TTP in September 2013.
 
My story starts long before the actual TTP diagnosis. In September 2011, at just 28 years old with an 8-week-old son, I was at my sister's house when I started to experience chest pain. My sister decided to take me to the hospital, just to be safe. I was having a heart attack. I was flown to Toronto General Hospital where a heart cath was done, but nothing was found, and 3 days later, I was released.
 
Eighteen months later, one day out of the blue, I lost my ability to speak. My husband rushed me to the hospital, where it was ultimately determined that I had suffered a stroke. I spent 30 days in the hospital learning to write and talk again.
 
In September of that same year, I had a really bad headache and noticed that one side of my body was starting to go numb. I thought I was having another stroke, so I went back to the hospital. They did some blood work and I was told that my platelets were at 16. I had no idea what that meant, but I was given a bag of plasma and sent to the stroke floor.
 
I remember being placed in the same room I had been in during my first stroke and thinking, "here we go again." I've been told my husband and mother came to the hospital the next morning and I would not wake up, so I was moved to the ICU. I remember waking up a few times and hearing familiar voices, but I would quickly fall back asleep.
 
Again, I was flown to Toronto, this time to Toronto Western Hospital where it took 24 hours to diagnose me with TTP. By the time they were ready to start treatment, I had woken up. I remember freaking out as they tried to put tubes in my neck. I began feeling very claustrophobic and again, I couldn't talk at all! I ripped the plastic off and started crying. They had to put me out in order to get the tubes in and when I woke up again, I had a ventilation tube in my throat. That was pretty rough. I had my first plasma treatment that night.
 
The next morning, I was able to talk again and the ventilator tube was removed. The doctors came in and told me that I had been diagnosed with TTP. 

Join Annie and other TTP community members
o n November 7, 2015 
to help shape the future of the Foundation by
attending the
2015 PATIENT EDUCATION DAY
in Toronto, Ontario

Registration is FREE, but REQUIRED! 
CLICK HERE  to learn more and register TODAY!
 

In all, I've had 60 plasmaphersis treatments, as well as Rituxan and I am thankful to be alive. I have been in remission for just over a year and am now looking for ways to get involved with the TTP community to make a difference for other TTP patients. This desire to learn and do more led me to the Answering TTP Foundation.
 
I am proud to say that I participated in the 2015 Walk to Answer TTP Together this past September 19! At first I had planned to keep my walk small and personal, as I am not one for the spotlight. But as Walk Day neared and I started to really give thought to how rare this disorder is and how few people know about it, I decided I had to do something more - if I didn't, who would? I was able to attract the attention of a local newspaper and television station to cover my story to generate even more awareness before Walk Day! Walk Day itself was magical! Although the clouds threatened rain, it held off so my family, friends and I could walk in support of Answering TTP Foundation. About 50 people gathered to walk and support us during our walk!
 
I was so moved by the support and how great I felt after my walk that I knew it was just the beginning of my journey to get more involved with the Foundation. I am so excited to continue getting more involved to make a difference, and that is why I plan to attend the upcoming Patient Education Day in Toronto, Ontario! I want to learn more about TTP, share my experience with others face to face, provide feedback that might help future TTP patients, and most importantly, I want my voice to be one that is involved with helping to shape the future of this Foundation that supports international TTP research that will one day find a cure!
 
I hope you will consider joining me on November 7, 2015 as the Foundation looks towards a future that can only be built with the support of the community. 

~ Annie Maynard
 
 


In Memory of Dr.  Haifeng Wu
By Dr. Spero Cataland, M.D.

It is with great sadness that I pass on the news of the death of Dr. Haifeng M. Wu, a dear friend and dedicated researcher in the field of TTP.  Dr. Haifeng M. Wu died after a long and courageous 5-year battle with cancer on July 27, 2015.  Haifeng touched the lives of everyone he met, and I was blessed to have been able to work with him for the past 14 years.  His infectious smile brightened the day of everyone he met. His tireless work ethic and dedication to the study of TTP has improved the lives of patients diagnosed with TTP around the world.  A quote from the late Senator Edward Kennedy was a favorite of Haifeng's, and I believe it captures well his caring and selfless spirit: " For all those whose cares have been our concern, the work goes on, the cause endures, the hope still lives, and the dream shall never die".   Dr. Haifeng M. Wu is survived by his beloved wife Dr. LiHui Xu of 28 years; daughter, Trudy C. Wu; son, Alexander Y. Wu; parents, Zhichao Wu and Qiaorong Li; brothers, Haitao Wu and Mack "Hailin" Wu; and sister, Haimei Wu.

Walk to Answer TTP Together
Over $40,000 raised so far!
 
Results for the awards will be tallied on October 19, 2015. There is still time to get your team to the top of the fundraising leader-board. These much needed funds will be put to work funding TTP research, support and education programs.  
 
On Saturday, September 19, 2015, over 250 international participants took steps, in their own communities across North America and Europe, to improve the prognosis for all TTP patients by participating in the Walk to Answer TTP Together!  Congratulations to all those who participated.
 

REMEMBER REGISTERED PARTICIPANTS:
  1. KEEP THOSE DONATIONS COMING IN!  
    Funds collected and received by the Foundation before October 19, 2015 at 4pm EDT will be counted towards your overall fundraising goal, meaning there is still time to raise life-changing funds towards a great cause and be in the running for one of the top fundraiser awards.  
  2. DO YOU HAVE TTP AWARENESS SPIRIT? If you would like to be considered for the spirit award you must (1) submit pictures or video of your walk showing your spirit and (2) have an active fundraising page that you have personalized with pictures and a story of why you are fundraising and walking for TTP! 
  3. KEEP YOUR OFFICIAL WALK T-SHIRTS FOR NEXT YEAR!
    That's right, moving forward these new sharp black T-shirts will be the official T-shirt of the Walk to Answer TTP Together. In an effort to reduce future registration fees for returning Walkers, we have designed this official Walk T-shirt. Didn't register this year? Not to worry, we plan to still offer a registration rate that will allow new participants and returning participants who want a new shirt the opportunity to get one!
Check out more pictures from this year's Walk HERE!


YOU Can Help Shape the Future ...
TTP Patient Education Day 
Registration for this event is FREE, but REQUIRED.
Registration deadline is Friday, October 9, 2015. 

 
WHO SHOULD ATTEND:  International TTP patients, supporters and medical professionals.
 
WHEN:  November 7, 2015 | 8am - 5pm
 
WHERE: Toronto, ON, CA

WHY: 
The day has been specially designed to help bring the international TTP patient, supporter and medical professional community together to share, learn and provide feedback. Participants will have the opportunity to help the Foundation pave the way forward to shape the future of the Foundation. The day will offer developments in TTP treatment and research, targeted workshops, and the opportunity to provide feedback to the Foundation as it develops a comprehensive care document to assist in standardizing the care for those affected by TTP.  
 
We are excited to announce that we have several guest speakers booked for this event including: a social worker to help build an environment of comfort and trust, Dr. William Clark, a research grant recipient, and a motivational speaker to empower our community.  

A complimentary breakfast and lunch will be provided to all registered participants. The event will take place at the Holiday Inn near the Pearson International Airport in Toronto to make it as convenient as possible for those traveling from out of town.

ACCOMMODATIONS:
A special group hotel room rate has been secured until October 16, 2015 for those requiring accommodations. After October 16, 2015, regular room rates will apply. 
 
YOUR participation will help determine and shape the future of the Answering TTP Foundation.  
 
Research Update
New Answering TTP Foundation Research Grant
Awarded to: Dr. Claudia Tersteeg, FWO postdoctoral researcher, Laboratory for Thrombosis Research, Leuven, Belgium
"The results of our study will hopefully bring new insights into our knowledge on TTP. When we understand the disease better, and know the role of different key-players in the presentation of the disease, we can design novel therapeutic strategies for TTP patients" -- Dr. Claudia Tersteeg

Hereditary TTP New Product Study (phone)
Branding Science, an independent market research agency, is seeking patients and caregivers who may qualify to participate in an interview to discuss their opinions on concept materials for a new treatment for Hereditary TTP. For details see the flyerMention of any treatment products associated with this study are provided for information only and their inclusion is not an endorsement of a particular product or company by Answering TTP Foundation.

IN THE NEWS - Late Stage Study for Acquired TTP
An exciting late stage study to investigate a new drug's ability to reduce treatment time, when administered in addition to the standard-of-care. Read more at  nasdaq.com. ( Mention of any treatment products associated with this study are provided for information only and their inclusion is not an endorsement of a particular product or company by Answering TTP Foundation.)  

EVENTS SNAPSHOT
Upcoming events YOU don't want to miss!
Saturday, September 17, 2016
5th Annual Walk to Answer TTP Together
This is a global event! Walk anywhere in the world, any distance for 2 hours to raise life-saving awareness and funds for TTP! Individual or Team Registration available!
April 23, 2016
7th Annual Chance for Change  Game Night
This Toronto, ON event boasts entertainment, fun games and an extensive selection of auction items and prizes. 
 
Saturday, November 7, 2015
Patient Education Day
International TTP patients, supporters and medical professionals are invited to register to participate in our upcoming Patient Education Day. Join us to share, learn and strengthen the TTP community. 

You Pick The Date!
You Pick The Event!
Get involved by organizing a fundraising event in your community! Big or small, every event helps to raise life-changing funds and life-saving awareness for TTP! Bake Sale or Gala, we're here to support you!
SUBMIT YOUR PATIENT / SUPPORTER STORY!
Now, for a limited time, when you submit your story officially, you will receive our TTP Awareness Hat!

Are you looking to take the first step to get involved with the Answering TTP Foundation? 

 

Why not start by sharing the story of your personal experience with TTP as a patient or, if you are a supporter, the experience of a loved one you stood by as they went through or are going through TTP. 

 

Sharing stories may help to strengthen the voice of the TTP community while raising life-saving awareness! Your submitted story will be published on our website to help others facing similar challenges as well as adding a face to this rare blood disorder.  

 

 

A diagnosis of TTP, Thrombotic Thrombocytopenic Purpura, is scary and complex. Many patients have never heard of this 3 letter acronym before, nor do they have any idea as to its ramifications. Moreover, patients are told over and over that we "just don't know":

  • why it happens
  • what may trigger a relapse from remission 
  • why some patients relapse and others do not 
  • what the long term prognosis is
  • how to ease treatment
  • how to cure TTP

These questions remain unanswered because research is limited. TTP is an orphan disease that afflicts 3 in 1 million people per year. It is too rare to make it economical for pharmaceutical companies to specialize research to find a cure. The purpose of Answering TTP Foundation is to help find answers to these questions by connecting patients and supporters. Together, we can raise awareness and raise funds to support patients, treatment and research.

 

Answering TTP Foundation provides the Canadian national TTP community with a supported platform to further common goals including:

  • supplying fundraising support and guidance to raise funds for effective TTP research to ultimately find a cure!
  • developing TTP education materials and distribution initiatives to educate the public and the medical community to speed diagnosis and save lives.
  • maintaining a consolidated information platform to disseminate information to the geographically dispersed community.
  • providing patient support to alleviate the feeling of isolation that accompanies the diagnosis of a rare disorder.
  • inspiring TTP patients and supporters to share their stories to help enrich the TTP community and garner public support for TTP.
  • providing a unified voice to ensure access to the safest and most effective treatments.

We need your help to improve the prognosis for TTP patients. Help us find the answer to TTP.

 

Answering TTP Foundation 

 www.AnsweringTTP.org

 22 Prince George Dr.

Toronto, ON M9A 1Y1

416 792 4656 | toll free. 1-888 506 5458

Contact@AnsweringTTP.org 

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