Articles Tagged with Awareness

Fourth grader is an inspiration to her classmates

DSCN0240 (2)Many of us spend years trying to find a cause to move us to action, and we strive to make a difference.  Well Kaelin Thomas is doing just that!  At only 10 years old, Kaelin is making a difference in her community and beyond.

After learning about EB and how it affected those who face it each day, Kaelin felt a very strong call to action.  She wanted to help educate others in her community about EB and the organizations who support families and research.  As a member of the Elementary Honor Society, she had a opportunity to present to the Student Council, an opportunity to teach her peers about EB and hopefully inspire then as she has been inspired.

She has achieved this and more.   Kaelin has sparked passion in her classmates to become part of something bigger then themselves.  There are now several fundraising efforts within groups at her school and students are out educating others.   Her presentation powerful and she now has the opportunity to present to the National Elementary Honor Society, which will hopefully open more doors for her and provide her with more opportunities to help others and make the world a better place.

I am so incredibly proud of Kaelin and her passion.  She is making such an impact in her community and in the EB community as well!  She is teaching those around her some of the most valuable lesson in life.  She will do great things in her life, I have doubt.

Here is her presentation to the council…


Why I Refuse

Good Morning!  Since we are coming to the end of the Student Council run, I wanted to talk to you about a great organization called I Refuse.  We all know about places who help raise money for kids with cancer and other well known diseases, but I wanted to tell you today about a rare disease that not a lot of people know about.   I Refuse was started by Christie Zink in Minnesota.  She is a photographer who started to take pictures of small children that were born with a disease called Epidermolysis Bullosa, or EB, which is easier to say!  This is a rare disease that causes a lot of pain and is eventually fatal.

EB means that the protein that holds the layers of your skin together are missing when you are born.  This disease is genetic, so you are born with it, you don’t get it later in life.  So, say someone grabs your hand or you brush up against a desk or wall.  Normally nothing will happen to your skin or maybe you might get a bruise.  If you have EB, you skin would tear or blister and it wouldn’t heal for a long time, if at all.  You would be at risk for bad infections.  Your skin would have to be constantly covered in bandages.  You wouldn’t get to play like a normal kid.  EB causes other problems too.  Blindness and cancer are common in EB kids.  It is really sad.  EB kids are often called “Butterfly Kids” because their skin is as fragile as a butterfly wing.  The slightest touch can cause a lot of damage.

The good news is that there are doctors who are finding new ways to help kids with EB.  This is where the I Refuse Campaign helps out.  In Minnesota, Dr. Jakub Tolar is researching and testing new ways to use bone marrow transplants and stem cells to help out kids with cancer and EB.  He never quits trying to find a way to cure EB.  He relies on the donations he gets for research.  P.U.C.K (Pioneering Unique Cures for Kids) and I Refuse donate a large amount each year to help find a cure for EB.

Please look at my board here.  These little kids are a small example of the kids who have fought hard against EB or who are still fighting EB every day.  Look how small they are. I wanted to bring this to your attention because we need to let people know about this disease and how bad it is.  We are the future doctors and scientists and we need to find a cure.  We can make a difference in the lives of all EB families and it will also make a difference in each one of us.

Since the end of the year is coming up, I hope we can spread awareness about EB and maybe find a way to support the I Refuse campaign to help these kids.  They deserve a chance to do what we do every day, play and run and hang out without being afraid they are going to get hurt or even living long enough to do these things everyday.

Thank you for listening!

So Kaelin, kudos to you, I cannot wait to meet you!!  Keep up the amazing work you do, you are going places!!

Kaelin and her family will be taking their family trip to Minnesota in June to participate in Time to Fly.  You can help Kaelin in her fundraising efforts by clicking HERE

Advocacy, One Year Later…

The last several weeks have been somewhat bittersweet, for it was one  year ago that my life took an interesting direction, one that I never could have imagined.  It was a year ago when this path unfolded and I am forever grateful.  I want to start off my EB awareness week by reflecting on how this journey began and remembering the brave little soul who brought me here…Tripp Roth

It is not often when we are given opportunities such as this, opportunities in which we have the ability to make a difference and impact the lives of others.  This could have gone much differently had I not followed my heart, had I not read that blog.  Things would be different had I just turned away, but I couldn’t.  Something drew me to Tripp and grabbed a hold of me.  I was gripped whenever reading Courtney’s entries…they were so incredibly powerful.  I watched as people started coming together to support him  and I was  inspired.  I knew I had to do more…

That is when my life was about to change…when my journey truly began…

I remember boarding the plane that Wednesday last October.  This was such a great opportunity, and I was so thrilled that my new friend Judy had reached out to me to help.  Finally I had a chance to do something for this sweet boy whom I had come to love.  I had no idea what to expect and I certainly was unprepared for what I was about to experience.  Here is an excerpt from a note I wrote after that weekend:

I remember walking through the door and the tears starting to come, I almost felt like I couldn’t breathe and I was starting to get lightheaded.  Then something happened that I will not ever forget.  I turned my body to my right and saw Courtney and Tripp in the rocker.  Courtney smiled her beautiful smile that we have all come to know and admire and Tripp was in her arms.  That is when it happened…all of a sudden a very odd feeling came over me.  I immediately felt a powerful comfort and peace.  It was amazing, and to be honest I am not sure I will ever be able to find the words to describe it.  Each moment I spent in Tripp’s presence I felt at peace.  That is not to say I did not shed any tears I most certainly did.  I shed tears of gladness and sorrow, but all the while felt peace.  I was in the ebb and flow of Tripp & Courtney’s love and it was absolutely AMAZING and so very powerful.  I am not sure that I will ever experience that again in my lifetime.  It was such and honor to witness it and be in it.  I am so very grateful.

Now with that being said I feel that I also need you to understand another aspect of my experience…witnessing Tripp’s suffering.  This is where it becomes difficult for me and I am not sure I am fully prepared to share, but I will try.  During my time, I was blessed with the opportunity to be a part of Tripp’s bath not once, but twice.  Such an intimate thing to be a part of, but I must say that although I had (as we all have) seen pictures, nothing could ever have prepared me for the experience.  As I try to find the words, my eyes well up with these tears because I am reminded of Tripp and his little body trembling.  It was so clear that he was not only trembling because he was cold;  he was clearly anxious and frightened depite being sedated.  Courtney and her mom carefully and gingerly removed his dressings all the while apologizing to him.  I just remember watching his face and his body language and feeling absolutely helpless.  As hard as I tried, I could not help but cry…this just did not seem fair.  Bath-time is supposed to be a time to laugh and splash not a time to be in agony.  As I watched Tripp’s face, it was clear to me that he was struggling and that he was in pain and then I saw it…out of the corner of his eye, one tear started to fall.  I watched as it ran down his face and at that moment his pain became so real that I could feel it and my heart broke.  That tear just really spoke a million words.  That tear moved me in a way that words simply cannot express.  I wanted nothing more than to wipe his tears and comfort him.  I felt helpless in that moment.   I started asking God in my head why on earth this has to happen…it does not make any sense.  Really?  I just cannot make sense of this…I want to , but I just cannot.  While Courtney brought Tripp to the tub, I remember watching and trying to stay out of the way, all the while feeling so compelled to just want to hold him and comfort him.  In my head I was going crazy and then there is his mommy gracefully bearing her cross and caring for Tripp as only she could. I saw it’s beauty and was once again comforted by the love that was flowing between them.

 I know that as I type, as hard as I try to convey to you my experience, it is just beyond words.  What I know is that we often see Tripp’s pictures and videos and they make us smile because he has such an amazing light about him…his spirit is so beautiful.  However, for me that has all changed.  For I know that behind each smile is this amazing and beautiful boy who spends his days fighting and even on his very best day he is still suffering tremendously.  I have seen his pain and I cannot forget.  I apologize if this has come up short, I am still trying to process through my emotions and I am not sure I will ever truly be able to articulate my experience in a way that is meaningful and in a way that really truly conveys it’s power.

My love for Tripp runs much deeper that I can tell you and I can assure you that I will never give up on him and I will fight to raise awareness so that all of his pain and suffering will never be in vain.  I am so thankful to Courtney for allowing me to be apart of Tripp’s journey and for being such an inspiration to all of us.  I know that I am abundantly blessed…

So, as we start EB Awareness week 2012, I reflect on the last year all that has changed; where this journey has taken me all because of one very special little boy who to this day continues to inspire me and guide me.

This may or may not be the path for you , but I encourage you to get involved any way that you can.  If you think you cannot make a difference, think again.  Allow your passion and your heart to guide you and I assure you that you will be lead to incredible places in which you will impact lives and your life will be impacted as well.  You can be a voice, you can provide hope…

There are so many ways to be involved on a variety of levels.  This week I will be posting on our Facebook Page different opportunities to raise awareness in your own community.  Remember, most of the important things in the world have been accomplished by people who have kept trying when there seemed to be no hope at all…

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

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.)


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.