Long post... head's up!
You may recall a while back where I spoke too soon about something, then retracted it with apologies to all involved? Well, the wait is over... I can finally tell you about this amazing opportunity for EB research. I am going to share with you VERBATIM the key points shared with me:
· The Epidermolysis Bullosa Medical Research Foundation (EBMRF) and the Jackson Gabriel Silver Foundation announce a matching challenge grant of up to $450,000 in support of the pioneering research efforts of Jakub Tolar, M.D., Ph.D., at the University of Minnesota.
· The two foundations have joined forces to broaden community awareness about epidermolysis bullosa, or EB, and rally support for safer treatment options for children with the disease.
· Between now and December 31, 2012, EBMRF and the Jackson Gabriel Silver Foundation will match all contributions, dollar for dollar up to $450,000, towards gifts to The Fund for Epidermolysis Bulllosa Research. To date, $200,000 in contributions have been received.
· or contact Courtney Billing of the Minnesota Medical Foundation at or to learn how you can amplify your support of groundbreaking EB research.
Because PUCK raises money exclusively for the research that Dr. Tolar is conducting, 100% of funds that we raise through our website, text-to-donate campaign, or fundraising events will be matched by this challenge grant. So, if you donate $100 to PUCK, Dr. Tolar receives $200! But here is where the math gets really fun... if you work for a company that has a corporate matching program, when you donate $100 to PUCK, they donate $100 to PUCK. When that $200 arrives, the challenge grant matches it, and it becomes $400! So, your $100 can turn into $400 for EB research just. like. that.
That is cool!
Now, here are the key points about Dr. Tolar's research as they were given to me, so that I may pass them on to you:
· Jakub Tolar, M.D., Ph.D., part of the trailblazing University of Minnesota team offering experimental but risky blood and marrow transplants aimed at curing epidermolysis bullosa (EB), is pursuing innovative research focused on finding a safer treatment alternative for children afflicted with the disease.
· One “natural gene therapy” approach involves taking advantage of healthy patches of skin that are present on some children with EB and removing healthy skin cells, turning them into powerful stem cells called induced pluripotent stem cells (or iPS cells, which can be coaxed into becoming any type of cell in the body), expanding them in the lab, and giving them back to the patient where they would grow more healthy skin.
· Another approach, “seamless gene therapy,” involves the removal of a patient’s skin cells, “cutting” the DNA at the mutation to correct the gene in the lab, “growing” those corrected iPS cells into blood-forming or skin cells, and reintroducing them into the child’s body.
· These experimental techniques should eliminate the rejection risk normally associated with transplants because patients are essentially receiving transplants of their own cells.
· In addition to helping children with EB, these techniques also could help heal thermal or chemical burns and treat autoimmune diseases of the skin.
· This therapeutic concept—modifying a patient’s own cells to mend or prevent damage—potentially could be applied to help heal the heart after a heart attack or repair the pancreas of someone who has diabetes, as well.
Dr. Tolar doesn't want this BMT to become incrementally safer, he wants it to become EXPONENTIALLY safer, and we support him 1,000% in his quest. We believe that if he can truly get the funding he needs to test these theories properly, well, we believe this is the closest thing we've got in terms of a viable treatment for EB.
So, what can we all do? Well, look. Let me be as honest and candid as I can (shock). There are a lot of great people working and leading great causes for a great many things that need attention and transformation on this planet. That is (hopefully) how it will always be. Ang and I ended up in this EB world, um, NOT voluntarily, and at this point of our journey, we could...
1. Walk away and move on with the blessings that are our two healthy children
2. Get involved with one of the many wonderful programs like Camp Wonder
3. Create as much attention and funds as we can to/for the treatment that we think will make the biggest difference for JEB-h and RDEB kids going forward until we run out of gas.
Honestly, #2 never felt like our fit.
#1 gets more and more tempting as time goes by... BUT,
#3 seems like the best way to honor Bella in the near future, given that she entrusted us with her life, and we chose to take a chance on a new era of EB treatment with that life, and in turn, lost it.
It's funny... Political Action Committees raise millions every year for various candidates' campaign budgets... with no guarantees that the candidates will even get elected! Well, there's no promise (and Dr. Tolar will be the FIRST person to tell you this) that any of his ideas will work as well. These theories "may not get elected" either, but are they worth no less a chance than a candidate running for office?
EB is the perfect disease to do this research on, because with a disease of the skin, you SEE the results of the treatment, and it is DRAMATIC. Also, you can't experiment with stem cell transplants in populations where death may not be a daily risk... With JEB-h and RDEB, these kids are staring death in the face as a very real, very near possible - even probable - future. That's just the way it is, and we're gonna continue to write about "another EB angel gets his/her wings" on facebook for a long time unless something shifts.
I think Dr. Tolar is that shift. What he and Dr. Wagner have pioneered in Minnesota won't stay in Minnesota. EB BMTs are being done elsewhere, including in Vietnam, believe it or not! Minnesota is leading the way in this new treatment, and we don't want them to run out of funding. We don't want the momentum that they have created to stop.
So... we keep at it. Sharing our story. Raising awareness. Raising research funds. Pushing for a safe, effective treatment so that 10 years from now, there are various treatments for kids with EB, and no child ever has to die from it again. THAT is PUCK's vision. However, our personal vision is that if we could spare just one family the scar tissue in our hearts and brains from giving birth to, caring for, and losing a child with EB, well, all this typing will have been worth it.
Here's how you can help (yet again)...
We have this big event in Minnesota on June 30th called TIME TO FLY. It's a race/run/walk held by our parent organization, Children's Cancer Research Fund. If you are local to the twin cities, come walk with us. If you are not, donate to our team. Here's the link to our page:
TEAM PUCK PAGE
If you want to donate, just CLICK HERE
If you want to walk/run with us, just CLICK HERE
Once there, here are the step by step instructions for registering:
1. Pick the event you want to participate in.
2. If you want to make a personal donation, add it in the Additional Gift box
3. If you are willing, please set your fundraising goal to $250. :-)
4. If you want to purchase a sign, do so, or just click NEXT STEP at the bottom
5. Add your contact information and click NEXT STEP at the bottom
6. check the waiver box on the page and click NEXT STEP at the bottom
7. Review your registration summary and click COMPLETE REGISTRATION
8. If there is money owed, fill in your payment information and click PROCESS.
Will you join us, either physically or financially? You matter. You make a difference.
Thank you for the difference you make.
P.S. Local family news: yesterday we hit Seaworld, and I think the only job cooler than the one I have would be Dolphin Trainer. Yup. Love Ali posing for '80's day at school, and check out mommy's awesome 'Julian-proof' hair cut!