Thursday, 11 December 2014

Why I am Committed to Getting Involved!

"I am committed to getting involved in Thrombotic Thrombocytopenic Purpura (T.T.P.) awareness because it’s a cause that is close to my heart.
Audrina & Remy

In the span of a couple of years, I went from being blissfully unaware of T.T.P. to suddenly wanting to know everything about it. This need to learn about this rare blood disease grew when my cousin Audrina almost died from it. Her story is one that I thought I would only read about in magazines or see on the news. I never thought that someone I love would have to live with an incurable disease.

Remy & Audrina
I grew up with my cousin Audrina, who was diagnosed with T.T.P. three years ago when she gave birth to her daughter Remy. In a way, when Audrina received her T.T.P.diagnosis, it was like everyone who loved her did too. We all became committed to researching this exotic-sounding disease and trying to figure out what the heck “purpura” was. We all united and became Audrina’s Army, a name conceived for our team for the Annual Walk to Answer TTP Together, a walk dedicated to raising global awareness and funds for TTP. Audrina’s battle against TTP has inspired me to join in and to help the TTP community in anyway I can, but not just once a year while walking in the Annual Walk. I want to get more involved in different areas to help have the biggest impact I can.  

Two years ago, I completed my graduate degree in journalism and I devoted many articles and media projects to Audrina and her T.T.P. journey. I was proud to educate my classmates on this disease, and quite coincidentally, I learned that a fellow classmate’s aunt also had T.T.P.; it was like I was in a foreign country and I finally found someone who spoke the same language. It’s a testament to how an affliction as rare as T.T.P. can still unite groups of people – if you have the courage to talk about it.

Audrina's Army during their Walk to Answer TTP Together
Recently, my family and I moved from sunny Southern California to even sunnier Dubai in the United Arab Emirates. We left the day after the 2014 Walk to Answer TTP Together in September. Changing time zones does not mean that I changed my views on supporting Audrina through her journey as a T.T.P. survivor. Nor does it mean that I have changed my mind about getting involved with the Answering TTP Foundation. I may be on the other side of the world from the Foundation, but I have learned that there are ways that I can still get involved!  

No matter who or where you are, you can still reach out and make some kind of difference!"

- Laura Santana

To find out how you can get involved to help make a difference in the lives of those affected by TTP please visit our website HERE. You can make a difference!  

Wednesday, 26 November 2014

Volunteering for the Volunteer Patient Speakers Bureau

"On Oct 8th, 2014, Taryn, the Charitable Programs Director of Answering TTP Foundation, approached me about an opportunity to speak with a class of medical students regarding my experience with TTP at St. Joseph’s hospital in London, Ontario. She mentioned that this is a new program that the Foundation is piloting in hopes of getting patients into classrooms to help medical professionals put a face to this rare disease and help them better understand TTP and the patient experience.

At first, I was hesitant. I thought to myself, “is it worth taking a day off work to travel about 4 hours in total to share my story and answer questions students might have in half an hour’s time?” I asked one of my coworkers their opinion about the opportunity and she helped me turn my hesitation into excitement. She told me that by going, it would not only help raise awareness, but it would also be a great opportunity to help medical students get an understanding of how it affects patients and see the personal side of it. This in turn would not only help them treat the disease, but it might also speed the diagnosis of patients in the future should they ever come across a patient in their careers. After hearing my co-worker out, I decided that this was worth doing, even though it was only a brief appearance, so I asked my boss for the day off and decided to go.

On Oct 30th, Taryn picked me up and we made our way to London, Ontario. During our ride, she further discussed this new initiative and what they hoped this program would accomplish. She also talked about the other programs that the Foundation has in place for patients and upcoming intiatives, showing that this Foundation is making strides in spreading awareness and stretching out its reach, not only across Canada, but in other parts of the world as well.

We were a little bit early for the 3:30 class, so we went to grab a coffee at the hospital’s Tim Horton’s and I took some time to read over my speech. At 3:30, we met Dr. William Clark, the professor, in his classroom. After being introduced to the approximately 25 students by Dr. Clark, I made my way up to the podium and shared my story. A few of them asked questions, mainly on whether I was informed properly about what my disease was and how I in turn would explain it now. I told them that it was hard for me to understand how the doctors explained what my disease was and confessed that it’s still hard for me to this day, to explain what it is. After answering the questions, Taryn went to drop off some of the brochures and pins from the foundation and thanked Dr. Clark for allowing us to speak to his class and share my story.

Diana Hermosa sharing her TTP experience.

As I have learned since my sudden diagnosis with this rare disease, there is still so much work that needs to be done. So much more research is needed in order to find out what causes it, what can trigger relapses, how to ease treatment and ultimately, find a cure. In addition, seeing that there isn’t any other foundations dedicated to TTP there is a dire need to further expand the Answering TTP Foundation’s reach – we need to let hospitals, both in and outside of Canada, know that this Foundation exists so we can partner with many more medical staff to better prepare them in caring for TTP patients, from the time of the diagnosis until the end of their treatment. I also hope that through alerting hospitals of this Foundation, that more patients will be able to find this Foundation so that they can learn and connect with others; so that they know they are not alone! They need to know that there is a foundation that exists and that they can be part of this community in order to get that much needed support.

Luckily, thanks to Sydney, the Foundation’s founder, a community for TTP patients and medical professionals exists and this Foundation continues to do great work in supporting, educating and raising funds to fund research. However as patients, I feel that we need to do our part in helping this great Foundation make bigger strides in making this rare disease become more recognized. Together, we can have our voices heard. Although it only affects 3-4 people in 1 million, TTP deserves attention to help in finding better treatments and a cure.

Get started to help today; make your first step by sharing your story, whether you are a patient or supporter. Your story helps others by showing them they are not alone." 

- Diana Hermosa

Wednesday, 19 November 2014

Answering TTP Foundation Pilots an Exciting New Program!

On Tuesday, October 28th, 2014, I accompanied Sydney Kodatsky, Executive Director, on a road trip to London, ON, to take part in the Foundation’s first Volunteer Patient Speakers Bureau presentation to medical students. This new and exciting program brings TTP patients into the classrooms of medical students to help bring awareness and a voice to TTP.

Stakeholders have been asking for this program since the Foundation’s inception. I received directive from the Board of Directors to develop the program in 2014. I was fortunate to have support from Dr. William Clark, Professor of Medicine and recipient of an Answering TTP Foundation research grant, who invited us into his classroom to pilot the program.

Now we had a place, next we needed a speaker. I knew that I needed someone who was experienced, and who was comfortable telling their personal story to strangers. Also, I needed someone who could provide me with feedback in order to develop a training document for future patient volunteer speakers. I knew just who to ask, the Founder of the Answering TTP Foundation, Sydney Kodatsky, who is no stranger to sharing her personal TTP experience in front of public audiences. I knew that Sydney would need limited preparation help and that she would be able to offer me valuable feedback in regards to how a patient can prepare. Feedback that will further the development of this program so that we can roll out to other patient volunteers internationally!

Sydney happily agreed and the pilot of the program was in full motion.

We arrived at London Health Sciences Centre about 30 minutes early so that we could get our bearings and find the conference room where the presentation would be held. This also gave Sydney time to go over her prepared speech before speaking to the students.

At just after 3pm, Dr. Clark and his students, renal fellows, invited us into the cozy conference room. As Sydney spoke, I watched as each of the students took notes and seemed captured by Sydney telling her personal experience with TTP. When she finished, Dr. Clark and his students asked questions about everything from treatment she received, to how she felt when diagnosed, to what had been the scariest part of her experience.

After the presentation Sydney and I were energized about the impact that these types of presentations can have.

Me: “How do you feel that went?”

Sydney: “I feel like it went great. As a patient, I feel like I was able to bring TTP out of a textbook and give it a face. I feel that moving forward in their careers, TTP will be a diagnosis consideration when a patient presents to them, which means a patient may be diagnosed sooner because I took some time out of my day to share my story with these medical students.”

Me: “How did you feel your story was received by the students?”

Sydney: “They seemed genuinely interested when I was speaking and they asked thoughtful questions that I had no trouble answering. It was great that the Dr. Clark moderated this Q&A to ensure that he handled the more technical questions and I answered from the patient perspective. Any patient would be able to answer their questions.”

Me: “What are the 3 most important points you hope they took away from your story?”

Sydney: “1) To consider the diagnosis of TTP when appropriate; it is still too common that patients are diagnosed too late. 2) To understand a little bit of what it is like to receive such a rare and scary diagnosis, so that they can more effectively treat their patients. 3) To do what they can as doctors to support patient groups which play an important role to support patients, educate all stakeholders and fund research.“

I would like to thank Sydney again for accompanying me on this pilot. I am very excited about this program and look forward to engaging the TTP patient community to get involved, by sharing their stories in local classrooms. This program is still in the development stages, but the Foundation hopes to roll it out internationally in the near future!

Looking to get involved with the Foundation?

Why not start by sharing your story officially with us HERE online. Every story shared is unique and helps to generate more awareness for TTP!

Tuesday, 11 November 2014

The 2014 Walk to Answer TTP Together Top Fundraising Team Award Goes to...

Team: Walking for Trevor (captain: Kathy Downs)

Congratulations to team Walking for Trevor! This team was able to raise a remarkable $9,565! Funds that will help support Foundation initiatives including TTP education, support and funding for life-changing research.

Team Walking for Trevor on September 20, 2014

This is Team Walking for Trevor’s third year participating in the Walk to Answer TTP Together and second consecutive year winning TopFundraising Team Award

This year's personalized prize.

Way to go Team Walking for Trevor! Thank you for your continued support and hard work at fundraising, while also helping to raise life-saving awareness for TTP!

To see more pictures from this year's event please visit our photo book HERE