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!

Crafting to Raise Money for the Walk to Answer TTP Together

It's that time of year again, time to register yourself and/or your team to walk in the Walk to Answer TTP Together on Saturday, September 20, 2014, helping to raise awareness and funds for TTP support education and life-changing research. 

This year marks the 4th Annual Walk to Answer TTP Together and some individuals and teams are challenging themselves to do more and raise more for the Answering TTP Foundation! Below is an example of how one individual is doing more to raise more funds and awareness to meet her ultimate Walk goal! 

"A few times a year, I get together with girlfriends to try a new craft or recipe. In the past we have made pasta, stained glass, tried felting and crocheting. We call these weekend afternoons full of laughter and yummy treats “Craftaculars”.

On July 5^th, it was my turn to host. As I am not the handiest crafter, I choose strawberry freezer jam as our activity.  The strawberries were plump and sweet. It was as simple as washing and mashing the berries, adding sugar and pectin, and filling the jars. The freezer jam was much simpler and cooler than the regular jam we made in previous years. No need to cook the freezer jam or can the filled jars in a massive pot of boiling water.

Instead of being reimbursed for the cost of the activity, which is our group’s usual practice, I donated the supplies and asked the group to donate toward the efforts of my Walk to Answer TTP Together team, the Toronto Walkers.  I was thrilled that not only did the jam turn out, but a fun afternoon at home with friends contributed over $200 toward TTP!

I’ve learned that mini fundraisers to raise money toward your walk effort, and are easier to organize and more fun than you may think. They aren’t anything to stress over and make everyone feel good to have fun for a good cause.  

I challenge you to give mini-fundraising for your walk effort a try."

For ideas for your mini-fundraiser check out the Foundation's Organize a Fundraiser page HERE. You will find lots of great ideas for a mini-fundraiser!

2014 Volunteer Appreciation Dinner

On Tuesday, August 19, 2014 volunteers, both new and seasoned, and board members gathered for Answering TTP Foundation's Annual Volunteer Appreciation Dinner and Awards. The evening was filled with lots of celebration, food and laughs! A big thank you to our hostess, Margie Castiglione, a Foundation volunteer who has hosted the past two Volunteer Appreciation Dinners.

Sherri Sullivan, Vice Chair of the Answering TTP Foundation Board, addressed all volunteers and thanked them for their hard work and dedication that has helped the Foundation continue to grow and move towards its ultimate goal to find an answer for TTP.

The 2013-2014 recipient of the Heather Leckie Bryant award, in memory of her determination and immense contribution to the Foundation (Volunteer of the Year award) was Ian Wilson. Ian is the Foundation's IT Manager and is the mastermind and creator behind the Foundation's amazing new website that was launched last August. Ian continues to be involved on the backend of the Foundation's IT and keeps the Foundation's IT moving smoothly! Thank you Ian for your continued contributions to the Foundation, I am not sure where we would be without you! 

Sydney, Sherri & Ian (from left)

Chance for Change chair and board member, Tammy Robertson, also took a moment to thank the incredible volunteers who helped to bring the 2014 Chance for Change Game Night, benefitting the Answering TTP Foundation, to life! 

A big thank you to all Foundation volunteers near and far! The Foundation's accomplishments to date would not be possible if not for your generosity and dedication. It is only by working together that we will be able to find an answer for TTP!

To see more pictures from the event check out out photo book HERE.

Are you interested in getting involved with the Foundation? Check out our website Here and fill out the Volunteer Information Form to get started today! 

We look forward to having you on the team!