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Reflecting on 2012 – Epidermolysis Bullosa Awareness and Advocacy

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?

Sharing your gifts…advocate and make a difference

Hope, there is always hope.  It is something that I firmly believe…and hope, the difference does start with you…

In the past I have been asked about what lead me to Pioneering Unique Cures for Kids and the work being done at the University of Minnesota.  The answer is actually quite simple.   When I first learned about EB, after coming across “EBing a Mommy” (and reading the entire thing) I began researching.  When I read that there was no hope, I started search for anything, trying to find hope…something, anything really. I would stay up late at night reading anything and everything I could. I needed to know that it was not all heartbreak and tragedy. That is exactly what I got when I found Bella’s blog. When I started reading it, Bella was already gone, but there was something about her story that gave me this sense that there was hope. Hope because there was in fact this incredible team of doctors at Amplatz Children’s Hospital working so hard to give these kids  a better life.   For the first time, I was actually excited to live in Minnesota,!  I knew that there was a door opening and I also knew that this was an opportunity to make a difference…there was no way I could walk away from that!  From that moment on I have just allowed my heart to lead me, and the compassion and love for these children (and adults too) drive me.

Often we think that we have to do extraordinary things to make an impact, but really some of the simplest of things can make such a difference to those who are faced with the many challenges of EB.  Remember there are many different ways to advocate and everyone’s path is different.  The definition of advocate is simply this: a person who publicly supports or recommends a particular cause or policy.  Many of you advocate daily through social media and in your communities.  You make a difference in all of the things that you do and it shows.

Melinda Warner was featured in The Bryan Times (Ohio)

 

Last week I saw more posts on Facebook and Twitter than I ever have.   Not to mention the number or local news articles that have been posted.  People all over were sharing stories and information on their blogs and on their pages.  Not only were there a lot of things going on in the media, but there were awareness events being held all over the country, like this amazing group in Nevada who raised almost $1100 during awareness week.

(You can read about their fundraiser here http://tropicalsmoothiecafemak.wordpress.com/tag/epidermolysis-bullosa/)

Michelle Shriver and her group at Tropical Smoothie Cafe in Nevada

Everywhere I looked I watched as people from all over came together to support an amazing community, it was truly an beautiful and inspiring thing.

Although you may not think so, you all have something to offer, you too can make a difference.  We all have special gifts that we can share, that we need to share…

“There is a vitality, a life force, an energy, a quickening that is translated through you into action, and because there is only one of you in all of time, this expression is unique. And if you block it, it will never exist through any other medium and it will be lost. The world will not have it.” -Martha Graham

I want to encourage each and everyone of you to keep the momentum of awareness week going and share your gifts.  Maybe you are a great blogger who can offer to share the stories of some of these families, or even help them set up blogs of their own.  If you are a photographer like me, you can offer a tremendous gift to families through your portraiture.  Many moms I know are incredibly crafty and have their own businesses in which they can donate proceeds to help.  You can even do what my friend Andrea Ness has done, she coordinates a run in her community that is in honor of a sweet little girl Aubrey Joy Oberlin.  It is an amazing event that is driven by her dedication and her passion.  The list is really endless and every thing counts…every bit, no matter how big or small it all is part of the difference.

If you are reading this, I have no doubt that EB has touched you in some way.  Maybe you have been inspired by Tripp the way I have or maybe Easton, Liam or another person suffering has inspired you and you are looking for ways to become involved.  Please reach out, I, along with others are always more than happy to help people find ways to share their gifts because they are important and they can have a great impact.  So, let’s work together and make a change.  We can all  help the EB community, educate others, and support the research that will change the lives of many…are you ready?

Okay…it is time to Do Something.

The heart of research…finding a cure for EB

Epidermolysis Bullosa…I remember the first time I ever came across those words.  I did not realize at the time that those words would impact me so profoundly.  It was late at night and I happened to see the link to a blog on a Facebook page that I had started following a short time earlier.  There was this beautiful boy…Tripp Roth.  His mother’s words totally captivated me in a way that I really cannot describe.  I spent the entire night reading the blog from the very beginning.  This was the beginning of my journey into advocacy. Naturally I, like many others, scoured the web trying to find out every thing that I could about EB.  All I really knew at the time was that this was a rare devastating disorder that caused tremendous suffering.  It had an extremely high mortality rate and there was NO CURE.  That is right, there is no cure…those two words absolutely broke my  heart.  The thought that these children are born with no hope shattered me to my very core.  No hope…how could that possibly be? What I did not know at the time was that there was hope.  There was ground breaking research being done to find a cure for EB, and this research, it was being done right here in Minnesota.  Researchers at the  University of Minnesota were conducting clinical trials using adult bone marrow.  Little by little, they were making a difference in the lives of these precious children, they could save their lives and give them hope for some normalcy.  At the heart of this research is Dr. Jakub Tolar

As a pediatric oncologist, Jakub Tolar, M.D., Ph.D., sees tragedy every day. But little compares with the heartbreak he sees working with children who have epidermolysis bullosa (EB), a fatal disease that can cause the skin to slough off at even the slightest touch. “This is one of the most awful diseases I’ve ever seen,” Tolar says. While missing patches of skin are one of the most outwardly apparent signs of the disease, they’re only part of the complex difficulties these children and their families face. With an esophagus full of lesions, it becomes painful to eat. And because of the body’s constant but flawed efforts to repair itself, fingers can fuse together. Eventually, usually by age 20, these children will die of skin cancer. But not if Tolar has his way. A member of the pioneering University of Minnesota team offering promising but risky blood and marrow transplants aimed at curing the disease, he is now focused on finding a safer alternative (see sidebar). “It is high-intensity, potentially high-yield, very novel research,” Tolar says.

Nicole Endres (June 7, 2012)  Meeting the Challenge from http://blog.lib.umn.edu/mmf/news/givingmatters/2012/meeting-the-challenge.html

This research is so incredibly critical and and it has been a privilege to have the opportunity to support Dr. Tolar and his team.  I can say with the utmost certainty that he is one of the most inspiring people I have ever encountered.  His genuine compassion for his patients and his dedication to giving them a better life is truly something that is so very rare.  This goes far beyond doing a job….this is his life’s work, this is his passion.  He truly cares about these kids and he wants more than anything to be able to give them a chance.   These kids are at the very heart of everything he does.  Dr. Tolar is continuously striving to make life better for these kids despite the challenges and setbacks.  Because of this dedication, tremendous strides are being made and each new day brings them closer to finding a cure. This research relies heavily on grants and donations and this year the Minnesota Medical Foundation at the University of Minnesota was presented with an incredible opportunity by means of a substantial matching grant.  The Epidermolysis Bullosa Medical Research Foundation and the Jackson Gabriel Silver Foundation have committed to contributing up to $450,000, matching gifts from other donors received by December 31, 2012, dollar for dollar. The response to this has been incredible with donations of approximately $325,000, an amount that means a great deal to the entire team at the U of M.  However there is still $125,000 that can be raised that will be matched!  If all the dollars are raised, that would mean $900,000 being dedicated to this vital research and that is nothing short of amazing. Just take a look at some of the lives that have already been changed thanks to this program… (Click on the images to read their story.)

Fallyn

Daylon

Charlie

Keric

Payton

I find myself looking at these precious faces and seeing the light in their eyes, the joy and the happiness. Then I imagine their life before their transplant, I imagine the suffering that these children were forced to endure and the frustration and sadness of their parents when faced with this reality.  No child should ever have to endure the pain of EB and no parent should have to watch as EB ravages their child inside and out. Every child deserves hope, it is a beautiful gift and it is now a reality for kids with EB thanks to this very special team.  I hope that you will join me in supporting Dr. Tolar and fighting for a cure…providing hope where once there was none.   If you would like to show your support you can make a one time donation or an ongoing pledge through Pioneering Unique Cures for Kids, an organization dedicated to raising funds for this vital research.  To donate, click HERE  Remember, every dollar counts TWICE!  Thank you for helping make a difference and helping to end the needless suffering that is caused by EB.

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