Saturday June 21, 2014
Harriet Island Regional Park
Saint Paul, MN
On June 21 Team PUCK is joining the race against rare diseases like Epidermolysis Bullosa by participating in Time to Fly 2014 at Harriet Island Regional Park in St. Paul, Minnesota, which benefits Pioneering Unique Cures for Kids (PUCK).
Monday April 28, 2014
Tustin Ranch Golf Club
Saturday December 14, 2013
Holiday Inn Hotel & Suites at Arbor Lakes
Maple Grove, MN
August 3, 2013 | Want to learn about the future of one EB treatment? Read this BREAKTHROUGH article!
November 2, 2012 | On October 18th, we were able to host our first-ever Facebook chat with University of Minnesota's Dr. Jakub Tolar about his research on EB.
October 26, 2012 | Each year, the last week of October is designated International EB Awareness Week where parents, advocates, patients, doctors, friends, and family of those living with or dying from Epidermolysis Bullosa come together host myriad diverse events to raise public awareness of this rare, brutal disease. This year, Pioneering Unique Cures for Kids (PUCK) has launched a multi-pronged campaign that starts right in Minnesota at the University's Coffman Student Union. PUCK volunteers Christie Zink and Jen Nick, along with Kacey Gunther and her sisters from the sorority Alpha Gamma Delta, will be manning multiple tables and booths around the union to bring attention to college students that this devastating disease exists, and that a breakthrough treatment is underway right there at their own school. The booths will be manned throughout the week during the lunch rush, and volunteers will be handing out business cards with links to the PUCK website and the text to donate campaign.
Meanwhile, in the social media sphere, a coordinated effort on facebook and twitter shares daily success stories about various patients in the clinical trial at the University of Minnesota, as well as facts about EB. Multiple facebook cover photos for individual profiles and pages have been designed and will be rolled out throughout the week as well. Many thanks to Kris Huson at Childrens Cancer Research Fund, Brittni Brown and Courtney Billing at Minnesota Medical Foundation, and Christie Zink and Jen Nick at PUCK for all the work to make EB Awareness Week a success!
October 25, 2012 | Christie Zink, owner of This Little Light and Elan Images, has joined Pioneering Unique Cures for Kids as its new Relationship Manager. Christie is a passionate advocate for EB awareness, EB family support, and for the research being conducted near her Minnesota home at the University of Minnesota by Dr. Jakub Tolar.
Christie became involved in EB advocacy after discovering Courtney Roth's blog about her son Tripp about a year and a half ago. From there, she discovered Director Timothy Ringgold's blog, "Bella's Blessings," and not long after that, she began coordinating events as far away from her home as Louisiana to promote EB Awareness. Since then, she continues to coordinate fundraising and awareness raising events all over the country, including a phenomenally successful campaign called "I Refuse EB."
Christie explains, "There was something about Tripp's story that not only captivated me, but it grabbed me in ways that cannot really be expressed in words. When I read that there was no hope, I started finding other blogs trying to find hope in any of them...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 from 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 working so hard to give hope to these kids and to give them a better life. Her blog is also how I found out about PUCK. I was very excited to live in Minnesota! I feel like I have been given an amazing opportunity to make a difference and to pass it up would be crazy."
We are extremely excited to formally announce this amazing addition to the PUCK team," explains Director Timothy Ringgold, "Christie has been coordinating events with PUCK for several months now, and when co-founder Lonni Mooreland decided to step down from her role, it made total sense for Christie to take her place. Her passion and ability to "Get it done," no matter what it might be, makes her a powerful asset to further drive our mission and vision for a future where no child has to die from EB again."
Christie will continue to coordinate care and resources for patients undergoing the clinical trial at the U of M, while still promoting advocacy through her I Refuse EB blog and platform, which is now linked to the PUCK website under the Blog tab.
October 24, 2012 | Co-Founder, Lonni Mooreland, has resigned as relationship coordinator. Lonni was the spark that ignited PUCK in 2009, and she will be missed. Here is a statement from Lonni:
"PUCK was established in Dec. 2009 after much thought and consideration went into what to do to help the doctors and researchers who gave us HOPE for our daughter's future. When Sarah was first born, her medical outlook was grim and we got a lot of advice from the medical community like: trial and error-it could damage her skin more, just accept that this is how her life will be, accept that you will injury your child multiple times etc... We were devastated because we had no control and no idea how to accept all we were told.
We didn't have to because of the doctors at the University of Minnesota. They were already "not accepting EB" as how her life would have to be. It was hope that I couldn't describe to anyone else, overwhelming optimism, anxiety and anticipation all at once. When Sarah died we thought all hope was gone. It wasn't. The doctors were still working on a better treatment, they were learning from Sarah, but they needed funding. With the help of Dr. Wagner and the Children's Cancer Research Fund we decided PUCK was what I could do to help that hope continue. I am proud to say that each year since PUCK was established it has grown in the amount of money we've raised for the doctors, the amount of support we have received in and out of the EB community and the awareness of EB has increased.
I want to thank all of those who have supported us and who continue to support PUCK. Without your help and support PUCK wouldn't be where it is today. I am very confident in those who are now managing PUCK, in both their passion and abilities. I thank them for taking the torch and running with it. Even though I am not part of the PUCK organization anymore, it will always be a part of our lives and we will continue to support it."
Lonni's husband, Jay Mooreland, will continue to operate as Director of Finances. On her decision to move on, Director Timothy Ringgold said, "PUCK wishes to thank Lonni for all that she did to get this organization off the ground and running. This would be a daunting task for anyone, much less a parent grieving while still raising two more children, relocating, and going back to school. Her effort, faith, and perseverance served as an inspiration to us all and we will miss her."
Saturday December 1
10:00 a.m. - 11:30 a.m.
Holiday Inn & Suites
11801 Fountains Way N
Maple Grove, MN
Registration: $15 per person
Learn about the impact that Pioneering Unique Cures for Kids (PUCK) has had on the fight against rare childhood diseases such as Epidermolysis Bullosa (EB). Featuring special guest speaker Dr. Jakub Tolar, M.D., Ph.D, Associate Professor of Pediatrics at the University of Minnesota in the Division of Hematology-Oncology and Blood and Marrow Transplantation.
Help us pursue a match grant for donations made from now until the end of the year. We are halfway to our goal. Make a donation today and it will be doubled!
September 12, 2011 | Researchers at the University of Minnesota are making great strides in the treatment of a rare skin disease that is usually fatal.
August 14, 2011 | If ever miracles become mundane, such a phenomenon is taking place in this White Plains kitchen.
April 30, 2011 | It's not very often you come across people that make you feel like a better person just for having met them, but that's exactly what happens with Tim and Angelique Ringgold.
February 13, 2011 | Boy with a rare genetic disease doing well after receiving a treatment made possible by our investment in research.
August 11, 2010 | In a paper in the New England Journal of Medicine, our researchers at the University of Minnesota present promising results that give hope to children with the life-threatening, pre-cancerous skin disease recessive dystrophic epidermolysis bullosa.
Our researchers are the first to push adult stem cell therapies beyond treatment of blood and marrow disorders.
This breakthrough would not have been possible without your support.
Click here to learn more about this innovative research.