Monday, 26 May 2014

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.

Tuesday, 20 May 2014

CORD Regional Workshop


On Thursday, May 1st and Friday, May 2nd, 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.

Monday, 12 May 2014

Trekking for TTP … A 3rd Party Event


On April 12, 2014, Nazgol Eskandari, the daughter of a TTP patient, embarked on a journey to Mount Everest Base Camp to help raise lifesaving awareness and funds for TTP, while also marking the 10th anniversary of her mother’s passing of TTP.



Below is her story.

"In 2013, as I looked ahead to the ten year anniversary of my mother’s untimely death from TTP, I decided I wanted to do something special to mark the anniversary and to make a difference in the TTP community. Since my mother’s death, my sister and I have been actively donating to various causes that were close to my mother’s heart, in her honor, but this year I decided I wanted to do more, have more impact and do something big. A friend of mine had previously told me a lot about Mount Everest Base Camp and I thought that this would be the perfect journey for me to embark on to commemorate the 10 year anniversary, while helping to make a difference.

I called my event Trekking for TTP, with my ultimate goal being to raise as much money as possible. I set my goal at $5,000.

I wanted to ensure that the money I raised was put towards helping the TTP community, as TTP was the reason my mother is no longer with us.  I choose two beneficiaries that I would donate all my fundraising proceeds to - the Answering TTP Foundation and the University College London. 

Since deciding to undertake this journey last year, I have organized two bake sales, a walkathon, a charity brunch and my friends and family took part in the Dubai Colour Run, with all the proceeds going towards the grand total of my Trekkingfor TTP event.

To help achieve my $5,000 goal, I set up a Facebook page detailing what I was about to do and why, a YouCaring page and I sent a personalized email to all my family and friends about TTP, and the Trekking for TTP event.  The donations came flooding in.

To ensure that I could maximize my donation from my event to the two Foundations I had chosen, I relied heavily on friends, family and my own bank account to fund my journey. One of my friends kindly offered me most her trekking gear, as she had done the trek to the Mount Everest Base Camp. Any other gear I needed, I purchased myself. The tickets, tour and clothing were either donated to me or paid for by me.

Aside from organizing and executing smaller fundraising events, I continued to maintain a regular exercise regime, eating healthily and getting used to travelling long distances with a backpack. 

On the 11th of April, after much planning and much fundraising, I embarked on my journey. The wonderful tour company I used very kindly organized for me to reach the Mount Everest Base Camp on the day of my mother's anniversary - the 20th of April.

The trek was unlike anything I've ever done. It was truly a unique experience that was both physically and mentally challenging. When I first began planning for this trip, I was doing it all for my mother and for the TTP Community, it wasn’t until I embarked on the trek that I realized that I was doing this for myself too.

I believe my mother had a hand in guiding me on this trek to remind me that life is beautiful and that despite her passing, there is still so much that I can achieve. The trek taught me to be grateful and humble and to help others who needed my help, both within the TTP community and beyond.

Unfortunately, my mother’s experience with TTP did not have a happy ending. I still cannot believe that ten years have passed since I lost my beautiful mother to this rare disease. A disease that we had never heard of before and is still relatively unknown. It has taken me a long time to come to terms with the passing of my mother, but doing events such as my trek help me keep her memory alive. Before organizing this event, I was not terribly active within the TTP community, but I am happy now that I am. I like that I can share my experience with people who know what it feels like to lose a loved one to TTP and that I can help make a difference - no matter how small. I hope my story can inspire others to do more for those affected by TTP and bring the community together to share their stories."


- Nazgol Eskandari

On behalf of the Foundation and the entire TTP community we would like to thank Nazgol for her dedication that helped to raise over $2,500 to benefit the Answering TTP Foundation. 

To learn more about 3rd party events and how to organize your own check out our Organize a Fundraiser Page

Monday, 5 May 2014

aHUS Canada Meeting

aHUS patient (Michael) giving update speech
On Saturday, April 26th, 2014, both myself (Taryn, Charitable Programs Director) and Gergana (TTP Patient and Answering TTP Foundation Board Member), were invited to attend aHUS (atypical Hemplytic Uremic Syndrome) Canada’s 2nd Annual Meeting.  As you might not be aware, TTP and aHUS are closely related blood disorders and are so similar in presentation that it can make it difficult for doctors to differentiate between them. It is not uncommon for patients to be diagnosed as having one disorder, only to be “re-classified” or “re-diagnosed” at a later date. 

Both disorders fall under the umbrella term Thrombotic Microangiopathy (TMA). Check out our previous blog “TMA – What Does it Mean…” HERE for more explanation.

The day started bright and early at 8 am with breakfast and introductions, and Gergana and I were able to meet and speak with some aHUS Canada board members as well as aHUS patients. It was amazing to hear how many members of this small patient group were first diagnosed as having TTP and then years later were re-classified as aHUS. I even had the chance to talk to one patient who was currently unsure of her diagnosis, as her medical professionals had yet to classify her.
Dr. Christopher Patriqui

Throughout the day, there were a lot of informative presentations on various topics ranging from access to Solaris, a treatment used to treat aHUS patients to a clinical update presentation given by Dr. Christopher Patriquin, which was packed with information on both TTP and aHUS and Compliment activation.

Overall, it was a very informative day that helped both the Answering TTP Foundation and aHUS Canada see where there may be overlapping goals.


Thank you again for the invite, aHUS Canada!