As I reflect on the last year, I think about how this journey began and the opportunities that have come from it. As we enter into this new year, I would like to just take a look back at some of the moments of 2012 and say thank you. It is all because of the people dedicated to this cause that we have been able to accomplish so much this year.
Many people on this journey have been touched some how by the life of Tripp Roth, for many he is the reason that Epidermolysis Bullosa is part of their lives. This little boy had an amazing ability to change lives in so many profound ways, which is why so many of us were so shaken when he died on January 14, 2012.
His life gave me and many others a purpose much bigger than we knew possible and he has become the motivation for many of us to continue to raise awareness and fight for a cure. For me personally, he is why I am here today, he sparked my passion and opened my heart to an entire new world and gave me the inspiration I had been longing for to make a difference.
Unfortunately Tripp would only be the first of many who would be taken from us too soon. In 2012 we also said good bye to a sweet little boy named Seth who was in the process of being adopted by Charlie Knuth’s parents. After an extended visit from him mom Trisha, Seth became very ill and unfortunately his body just could not fight anymore. Seth died on February 22nd finally feeling a mother’s love; knowing that he had a family.
On March 24th, the community said goodbye to sweet little Chloe. Chloe fought very hard, but was never able to leave the hospital. Although her stay was far too brief, she touched so many hearts. She sparked an awareness campaign lead by Mollie Walker of Louisiana. Mollie sold shirts designed for Chloe and donated the proceeds to EB Research.
As we approached the Easter season, many in the community we again shaken by the loss of Quinn Seymour on April 7th at Amplatz Children’s Hospital. Quinn was recovering from a bone marrow transplant, but unfortunately developed MRSA Pneumonia and she did not have the immune system to fight it. She died peacefully in the arms of her parents. It is because of Tripp that I had the opportunity to know and love Quinn and her family. I connected with Quinn in a very special way and she is missed so deeply.
In all approximately 37 have been lost this year to EB in the United States. This is a number that is unacceptable, a number that inspires us to do more and to come together to honor those who have died and those who continue to suffer…to fight EB! In May I Refuse was launched as a small fundraiser to honor Bella Ringgold’s birthday. This campaign has reached so many people and it continues to be a successful way to raise awareness and support research. Due to it’s success, this was created to share awareness and advocacy stories as well as information and ways to become involved. There were multiple I Refuse fundraisers across the country. I am very excited to continue development of this campaign in 2013 with a different look and some other fun additions to help get people involved, allow you to bring awareness into your communities and support research for a cure!
In June, many came together to support Pioneering Unique Cures for Kids in the annual Time to Fly walk/run. Thanks to the support of so many, I was able to personally raise over $11,000 (which was over all the most money brought in by an individual) and as a team, we raised over $25,000! It was hot, but to see kids like Layla and Jackson braving the heat, we were motivated to get out there and run! I remember the entire time I was running, why I was doing this and why I had to keep going.
In August, I had the opportunity to host several amazing advocates who traveled to Minnesota to visit the hospital and the Ronald McDonald House to see Jax. All of us had worked together on the the SaveJax campaign earlier in the year that was successful in getting lawmakers involved in getting a medicaid approval that would allow Jax to have his bone marrow transplant. During our time, we also had the opportunity to sit down with Dr. Jakub Tolar to discuss the current research and ways that we would be able to help him work for these families in finding a cure for EB. This conversation had tremendous impact on all of us. You can read SooAnn’s inspiring post HERE.
As summer came to an end, we began thinking about EB awareness week and Aubrey’s 5k that is coordinated by my friend and fellow advocate Andrea Ness. Aubrey was born October 6, 2010 with Junctional EB. Upon looking at her, she was nearly perfect. However, EB was ravaging her insides. After a short six weeks, Aubrey died surrounded by family on November 17, 2010. Andrea was deeply affected by Aubrey’s life and has made it her goal to do what she can in her honor. The race was not only incredibly emotional, they raised over $23,000 for EB research and brought so much EB awareness to Michigan! It was definitely an amazing way to kick off EB Awareness week!
The last week of October was incredible as I watched my news feed and twitter explode with posts and articles all aiming to raise awareness for EB. I spent part of the week at the University of Minnesota reaching out to students and staff about what EB is and the groundbreaking research that is being done at the U of M in hopes of finding a cure. We talked to so many people and handed out over 2000 awareness cards in just a few days!
There was an explosion of awareness online and so many advocacy and awareness pages have popped up to garner attention to EB, advocate for families and support the community as a whole. Pages like Support Baby Easton have used their following to help share other stories and support the other families who are affected. The EB community is an amazing family to be a part of.
In December, my friend and EB mom Jen Nick, had the opportunity to host the 2012 Wings of Hope fundraising brunch to benefit Pioneering Unique Cures for Kids. Guests had the opportunity to listen to our amazing speakers, Marc Seymour, Trisha Knuth and Dr. Jakub Tolar. It was also a special treat to have a special guest in attendance. Eleafar “Eduardo” Romero who is currently recovering from his bone marrow transplant was able to attend and spend this inspiring morning with us. Wings of Hope raised over $20,000 for Dr. Tolar’s research team. And although the final numbers for the year are not in, I can say with a degree of certainty that thanks to an amazing matching grant from The Jackson Gabriel Silver Foundation and The Epidermolysis Bullosa Medical Research Foundation approximately $900,000 has been raised for Dr. Tolar and his team. So incredibly exciting!
It is truly awe inspiring to see how far we have come in just one year, the impact that has been made and the tremendous amount of awareness that has been raised across the globe. I think that we can safely say that 2012 was pretty amazing, but it is my hope that we can make 2013 even better. Are you in?