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An update from Beyond Batten Disease Foundation
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YOUR GIFTS AT WORK
We are in an exciting and hopeful place in Batten disease research history. Not very long ago, scientists were unsure of the genetic cause of juvenile Batten disease, why cellular processes go awry, and, because of this, were at a loss as to how to fix the problem. Today, we can identify mistakes in DNA that cause the disease. We understand much of what goes wrong and are even able to slow the disease in our animal models! With your support and funding from Beyond Batten Disease Foundation, researchers have identified three potential compounds that may be used to treat children with juvenile Batten disease and are looking for more.
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WELCOME ABOARD
Cherie Flores and Jeff Hunt join BBDF board
The foundation welcomes two new board members, Cherie Flores and Jeff Hunt. Cherie is one of the original, most dedicated and passionate supporters of BBDF. In 2000, she and her husband Jim gave the largest gift in Batten disease research history to help establish research at Texas Children's Hospital in Houston. Jeff is CEO of PulsePoint Group, a prominent communication and social media firm. He has been a tireless contributor since BBDF's inception, when he and his team helped with the foundation's branding, mission, purpose and coordinating our acclaimed website.
Cherie and Jeff join Board Chair Craig Benson, and Directors Mark Chandler and Kyle Janek. Many thanks to the board for their continued strategic leadership.
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 A MOTHER'S STORY Who Will They Be? by Charlotte Benson I remember a little boy when I was young who was handicapped. I don't remember his name, but I'll never forget the impression he made...
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PERFECT MATCH Employee-Corporate match funds benefit BBDF
"Beyond Batten Disease Foundation is bringing light to an area that is so often overlooked - rare diseases - and creating a foundation on which future treatments and potential cures can be pursued."
-Essie Eisenfeld Davis
Senior Vice President of Human Resources at Ascend Learning |
 RUN TO THE SUN 2013 Third annual relay a success
Run to the Sun 2013 was a HUGE success! With 214 runners, 20 teams, 102 volunteers and over 1,400 donors, we raised over $222,000 for Batten disease research. What an incredible accomplishment! THANK YOU to Chair Lance Thompson and each and every one of you for supporting our mission to eradicate Batten disease. Be sure to check out the video from this year's relay and to mark your calendars for Run to the Sun 2014, April 26-27th.
All the way from Iowa...
You don't have to be in Texas to participate in Run to the Sun. Team Taylor ran with us towards a cure for Batten in Iowa! Heather Groth, team captain for Team Taylor reports:
"My son Taylor has late infantile Batten disease. We are from Battle Creek, Iowa, and we signed up for the virtual run not only to support him, but all other children who suffer from this horrible disease. What a great time we had! We are proof that even from a small town a thousand miles away from the relay, there is still a way to help! I encourage everyone, no matter where you are from or how small of a community you come from, to get involved. We are excited for next year already!
Read more »
Thanks Team Taylor! If you or someone you know is interested in participating in Run to the Sun 2014, but can't make it to Austin, we encourage you to create a virtual team and run with us-wherever you are! |
 FIFTH ANNUAL BBB Fishing Tournament reels in funds BBDF would like to thank everyone who participated in the 5th Annual Battlin' Batten in Baffin Fishing Tournament. It is the support of fundraising efforts like these that allow us to continue to fund research to find a cure for Batten disease. Special thanks to tournament host Neal Meinzer, who generously donates his time every year to host this event. Neal says: "The 5th Annual BBB Tournament was nothing short of a resounding success. We raised a tournament record of $43,000, which almost matches the aggregate total donations of all four prior years combined." Pictured above: First place team (from left to right) Kyndel Bennett, Stirling Warren, Stan Casey and Jonathan Ayres. Read more »
If you are interested in hosting a third party fundraiser to benefit BBDF, please contact Mary Beth Kiser, or visit the website to learn more. |
 FUNDRAISING FRIENDS Jett kids raise money for classmate
BBDF would like to thank Kate and Parker Jett for raising $200 for the foundation by selling paracord bracelets. The duo spent the day making bracelets, set up a table, made a sign and sold them in their driveway. They even had someone come by and order a dog collar!
"We have been in class with Christiane for the past two years and we want to help her fight her disease. She is our friend."
-Kate and Parker Jett |
UT STUDENTS SUPPORT BBDF PR students develop a dynamic social media plan
BBDF would like to thank Mackenzie Neel, Brooke Carter, Lesly Reynaga, Monika Arrieta and Stephanie Klein for our new social media plan! These students from Jeff Hunt's UT Austin Public Relations class spent the semester developing an informed and engaging plan utilizing social media to help the foundation connect with our community as well as engage new supporters. We will begin to implement the plan in August with the help of new social media interns. Read on for how you can help us with our social media campaign. |
SPREAD THE WORD Batten Awareness Weekend celebrated June 1-2
Batten Disease Awareness Weekend was celebrated earlier this month and we need your help to spread the word about our efforts to find a cure. Here's how you can help. It's easy:
On Facebook: Like our page, share our posts and updates with your "friends" and post a status telling your community why you support BBDF
On Twitter: Follow @BeyondBatten, retweet us and send a tweet to share and inform others
By Email: Forward this email to 10 friends and ask them to do the same, Share the Benson's story and encourage others to visit www.beyondbatten.org to learn more about us
"Alone we can do so little, TOGETHER we can do so much." Helen Keller |
 VOLUNTEER SPOTLIGHT Chris Martin
The success of our foundation depends on our amazing volunteers who continually donate their time and talent. BBDF would like to give special recognition to Chris Martin. Serving as the unofficial director of communications, Chris has been invaluable to the foundation, helping us raise awareness about Batten disease and our mission to find a cure. Chris is the creative mastermind behind all of BBDF's promotional videos. He is always ready and willing to support the foundation in any way he can, including being captain of Team Hope in all 3 Run to the Sun Relays and being this year's top individual fundraiser! Thank you Chris for all you do!
Become a volunteer » |
 SAVE THE DATE
HOPE Under the Stars: September 21, 2013
Read more »
Run to the Sun Relay: April 26-27, 2014 |
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Beyond Batten Disease Foundation
512-275-2600 or 1-877-6BATTEN
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