Bind Up Batten

at Beyond Batten Disease Foundation

The Klein Family

We thought nothing bad could ever happen to us again, simply because nothing is as heartbreaking as the death of one’s own child.

Six years after unexpectedly losing our three year old Max to a malrotation in his small intestines, we learned the devastating news that our second oldest son, Charleston, has juvenile Batten disease.

Batten disease is a rare and fatal genetic disorder that affects otherwise healthy children. The symptoms include blindness, seizures, cognitive decline and mobility issues. Currently the disease is terminal by the late teens or early 20s because there is no treatment or cure. Our family has joined Beyond Batten Disease Foundation and we are on a mission to change that.

Charles began having vision problems in preschool and he was fitted with glasses. Unfortunately, his vision continued to worsen, leading to a series of tests. In April 2017 genetic testing determined that he has Batten disease. Charles has three younger brothers who each carry a risk of having Batten disease, but none have been tested yet. We have chosen to focus on the “now” and enjoy every moment together, creating memories as a family.

Today, Charleston is eight and has begun to exhibit additional symptoms. However, he is still happy and active. He enjoys riding his bike and is even learning how to snow ski. With the help of technology he continues to excel in his second grade classroom. When Charles grows up he wants to be an engineer. He is our son, a loving brother to Gus, Leu, and Henry. He is a friend, a grandson, a cousin and a nephew. His determination strengthens us because if he’s not giving up then neither are we.

We have created Bind Up Batten at Beyond Batten Disease Foundation to spread awareness and raise funds for medical research to eradicate this disease. Together with the foundation and our community of supporters we are funding a treatment that slows the progression of the disease to help Charleston and all families who are affected by Batten. Please join our efforts by making a donation or supporting one of our fundraising events.

        

Upcoming Events

Inspire Run 5K

TBD
Gallup Park
Ann Arbor, Michigan

Ongoing Opportunities

*Events for which Bind Up Batten has been selected as a beneficiary.

Bind Up Batten Activity Timeline

Boston Strong ?for Batten

The Boston Marathon is one of the most highly anticipated running events in the world, and Adrienne Kersey braved the chilly and wet conditions earlier this month in honor of Charles.
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St. Patrick's Church Lunch Fundraiser

Charleston's grandmother, Cathy Tippenhauer, hosted a church fundraiser at her local parish in Grand Rapids, OH. Thank you to our partners in Michigan and Ohio for your support.
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Bind Up Batten Birthday Bash

To celebrate their birthdays, Kate Votava and Craig Hamilton asked for donations in lieu of gifts to support ongoing Batten disease research. Thank you to our good friends from Chicago, IL!
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Ventura's Fundraiser

In support of Bind Up Batten, Ventura's Mexican Restaurant in Toledo, OH donated a portion of their food sales to support research. Thank you for your support and generosity.
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Firefighters Charity Golf Outing

Thank you to our brave Jackson, MI Firefighters, who not only work daily to save others but who took the time to fundraise on behalf of Bind Up Batten.
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Party with a Purpose

Friends of Bind Up Batten gathered in Seville, OH for a "Party with a Purpose". Family and friends participated in a fun-filled day of outdoor excitement including camping, hiking, and water activities.
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First Annual Bind Up Batten Golf Charity

The first annual Golf to Bind Up Batten took place this summer in Waterville, OH, raising more than $10,000 to support Batten disease research and find a cure. Thank you to our sponsors and to everyone who participated.
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Cake Pop Fundraiser

Eight moms and one grandma worked to make over 700 cake pops and cake balls to support Charles! Thank you to everyone who visited us at Charle's school and Mike’s work to purchase a treat and show their support.
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Batten Up!

Charleston Klein's great uncle was a member of the 1968 AA Championship baseball team at Wilson Freight in Cincinnati, OH. After hearing the Klein's story the team pooled together donations in support of Bind Up Batten!
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First Annual Inspire 5K

The first annual Inspire Run 5K took place in Ann Arbor, MI, raising close to $5,000 to support Batten disease research. Thank you to all of the sponsors and runners (virtual and live) who made this event such a success.
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2018 Annual Newsletter

A simple thank you is not enough to express our gratitude. Your support has allowed research to move forward. Click the button below to view the full newsletter. Read more

Bind Up Batten Raises Awareness in TV Interview

Jo Klein shared the challenges of raising a child with juvenile Batten disease as well as her family's coordinated efforts with Beyond Batten Disease Foundation (BBDF) to discover a treatment in a JTV interview. Click the button below to view the full interview. Read more

2019 Batten Bash

Angie Lefere hosted the first annual Batten Bash fundraiser on Friday, March 1 in Jackson, MI. The community gathered at the historic Cascades Manor House for an evening of fun and giving. The event raised more than $30,000 to fund Batten disease research.
Read more

2nd Annual Bind Up Batten Golf Charity

Bind Up Batten brought together the community on July 20, 2019, for the 2nd Annual Batten Disease Go... Read more

Beyond Batten Disease Foundation was founded in 2008 to eradicate juvenile Batten disease by raising awareness and funds for medical research. Beyond Batten’s strategy brings together other affected families to connect communities and resources to achieve the goal. Bind Up Batten is partnering with BBDF to find a cure for juvenile Batten disease for Charleston and hundreds of other children.

The Be Project is a $6 million campaign to fund the first-ever treatment for juvenile Batten disease. Your contributions are making a difference!

Bind Up Batten has a raised a total of:

$126,203

Contributor Comment
Joseph Palof Supporting Bind Up Batten!
Kristen Kirkland Supporting Bind Up Batten!
Rob & Kathy Thomas (Macsay) I am so sorry for your loss of your grnadpa. He was a wonderful man and always made me laugh. You and your family are in my prayers.
Kristen Kirkland Supporting Bind Up Batten!
Glenn Seigler In memory of George Macsay.
Benevity Community Impact Nike Matching Gift: Jade Honnold and Sarah Rouleau
Peter Clifford We are honored to make this donation in memory of your father who was a very special man. Our thoughts and prayers are with all of you.
Gregory Gromek Supporting Bind Up Batten!
Karen Pagnotto With our deepest sympathy.
Alicia Cantua On behalf of the NOGA Board we make this donation to honor Cathy T father and grandson.
The Schuster Family We were sorry to hear of the death of your grandfather, Eric. We will keep you and your family in our thoughts and prayers, and say special prayers for Charles.
Nancy Fisher Supporting Bind Up Batten!
Sandra Barnes In memory of George Macsay for Charleston, his great-grandson.
Clayton Birney Supporting Bind Up Batten!
Debbie Pipik  In memory of George Macsay.
Emily Eyen  In memory of George Macsay
Salty Roads Band Sending love and prayers.
Brenda Overturf We are sorry for your loss. The Wendy’s Company Engineering Department (Bridget Riehl)
Robin Bauer A life well lived and a lasting legacy; Prayers and sympathy from the Bauer Family.
Rebecca Patterson We were so sorry to hear about your dad. You are all in our thoughts and prayers.
Catherine Kurth In memory of your dad George Macsay. May he rest in peace. You and your family are in my thoughts and prayers.
Kathleen Malone Supporting Bind Up Batten!
Kristen Kirkland Supporting Bind Up Batten!
Ellen Durham Supporting Bind Up Batten!
Angela Beauregard Supporting Bind Up Batten!
Donna R Iwinski Supporting Bind Up Batten!
Tom McKinch Supporting Bind Up Batten!
Bill Schaefer Supporting Bind Up Batten!
Jill Stechschulte Supporting Bind Up Batten!
Kristen Kirkland Supporting Bind Up Batten!
Sarah Bruneel In memory of Robbie Martinez
Magan Linkes Supporting Bind Up Batten!
Kristyn Falvo In memory of Robbie Martinez
Michael Anderson Supporting Bind Up Batten!
Matthew Yoder Supporting Bind Up Batten!
Betty Robenstine Supporting Bind Up Batten!
The Hamel Family Supporting Bind Up Batten!
Kristen Kirkland Supporting Bind Up Batten!
Orthopedic Rehab Solutions Supporting Bind Up Batten!
Charleston Klein Foundation Supporting Bind Up Batten!
Ryan Beauregard Supporting Bind Up Batten!
Mary Lou Hoffman Supporting Bind Up Batten!
Dawn Hoffman Supporting Bind Up Batten!
Rachel Hacker Supporting Bind Up Batten!
Bonny Parsons Supporting Bind Up Batten!
Cheryl Moody Supporting Bind Up Batten!
TJ Klein Supporting Bind Up Batten!
Kristen Kirkland Supporting Bind Up Batten!
Jerry McKindles Supporting Bind Up Batten!
Kristen Kirkland Supporting Bind Up Batten!
Brian Bell We offer prayers for your family and especially Charleston.
2019 Batten Bash Supporting Bind Up Batten!
Joe Macsay Vehicle Donation
Jennifer Brewster Supporting Bind Up Batten!
Kristen Kirkland Supporting Bind Up Batten!
John & TJ Klein Supporting Bind Up Batten!
Sheila Torio We hope the Batten Bash was a great evening- sorry we couldn`t make it! We`re thinking of you!
Daniel Dunigan We are praying for the entire Klein family.
Harry Wolverton Supporting Bind Up Batten!
Ronald Mason Supporting Bind Up Batten!
Bill Richmond Jr. Supporting Bind Up Batten!
Anne Fleming Supporting Bind Up Batten!
Mary Caldwell Supporting Bind Up Batten!
Mark Mathias Supporting Bind Up Batten!
Renee Moran Supporting Bind Up Batten!
Albert McGilvra Supporting Bind Up Batten!
Dian Tracy Supporting Bind Up Batten!
Brian McLaughlin Supporting Bind Up Batten!
Sue Macrellis Supporting Bind Up Batten!
Jo Hooper Supporting Bind Up Batten!
Rosemarie Beauregard Supporting Bind Up Batten!
Sara Lefere Supporting Bind Up Batten!
Doug Dysert Supporting Bind Up Batten!
Brad McEldowney Supporting Bind Up Batten!
Kim Brown Sorry we can`t make the event but we hope you have a great turn out! Prayers for your family!
Edward Steinman Supporting Bind Up Batten!
Kristen Kirkland Supporting Bind Up Batten!
Queen of the Miraculous Medal School Supporting Bind Up Batten!
Amy and Don Bayes Supporting Bind Up Batten!
Mrs. Kim Brown Sorry we can’t make the event but we hope you have a great turn out! Prayers for your family!
Facebook Donations Donations from November, 2018
Mobile Giving Text to donate for June 2018
Inspire Run 5K The first annual Inspire Run 5K raised $4986 for Bind Up Batten!
Betty Robenstine With love for Charles Klein
Kelly Anderson From my friend Kelly to you.
Sheila Torio Happy Birthday Charlie and Happy Thanksgiving to the family
Jessica Miller Supporting Bind Up Batten!
Sarah Sutton Supporting Bind Up Batten!
Neil Yodnane Supporting Bind Up Batten!
Jasmine Easler Supporting Bind Up Batten!
Party With a Purpose The first annual Party With a Purpose Fundraiser raised $4,415 in support of Bind Up Batten!
Cake Pop Fundraiser Cake Pop Fundraiser raised $1,755 in support of Bind Up Batten!
Anne Fleming Supporting Bind Up Batten!
Brian Duensing Foundation Supporting Bind Up Batten!
Natalie Fernandez Chickpea Masala fundraiser in support of Bind Up Batten raised $260!
1968 Wilson Freight Baseball Team The 1968 Championship baseball team from Wilson Freight raised and donated $1,760 in support of Bind Up Batten!
Anne Bomkamp Jo you are an amazing mother and seeing all you do for your family is breathtaking. I will continue to donate as I can, keep posting and making everyone aware.
Jack Bouldin Supporting Bind Up Batten!
Kelly Lammers Supporting Bind Up Batten!
Nick Schaefer Supporting Bind Up Batten!
Firefighters Charity Golf Outing Raised $1,000 in Support of Bind Up Batten!
Pigeon Hen Pottery Supporting Bind Up Batten!
Barbara Arnold Supporting Bind Up Batten!
Mobile Giving Foundation May 2018 Text Donations!
Mobile Giving Foundation February and March 2018 Text Donations!
Scott Lyons Supporting Bind Up Batten Birdhouses!
2018 Golf Outing Thank you to everyone who participated in our Golfing to Bind Up Batten fundraiser. The event raised $10,045 for research!
Deborah Fleschman Supporting Bind Up Batten Birdhouses!
Cheryl Tinney Supporting Bind Up Batten Birdhouses!
Michelle Duffill Supporting Bind Up Batten Birdhouses!
Cassy Sleeper Supporting Bind Up Batten Birdhouses!
Shannon Bandish Nash Supporting Bind Up Batten Birdhouses!
Kelsha Gibbs Scarlet & Grey
Beverly Floyd Steve, this is in honor of Charlie. Prayers and Encouragement!
Mobile Giving Foundation April 2018 Text Donations!
Brownstone & Shire Inc. Big Frog T-Shirt Fundraiser in support of Bind Up Batten!
Macchia Family Foundation In support of Bind Up Batten!
Diana Pulschen In honor of Kate and Craig’s Birthday!
Samantha Benson Supporting the Klein family – hoping to make a difference in finding a cure!
TJ Klein Facebook Fundraiser in support of Bind Up Batten!
Ventura’s Fundraiser The fundraiser at Ventura’s raised a total of $1,363 for research!!
Laurie Schaefer T-Shirts for Bind Up Batten!
Mobile Giving Foundation March 2018 Text Donations.
Colleen Crowley Love you to pieces Charleston!!
Kristi Riley In honor of Charles Klein!
Andrea Stricker In honor of Kate and Craig’s Birthday!
Diane Daniels In support of Charles Klein!
Joe Niemiec Destroy Batten!
Barbara Gramza Supporting Bind Up Batten!
Kerri Baumgartner Supporting Bind Up Batten!
Eric Schirch Supporting Bind Up Batten!
Richard and Beverly Chudey Supporting Bind Up Batten!
Janet and Norman Czubek Supporting Bind Up Batten!
Michael Apling Supporting Bind Up Batten!
Richard and Beverly Chudey Supporting Bind Up Batten!
Marino’s Event $500 raised in support of Bind Up Batten!
Marlo Parker Fenderson Supporting Bind Up Batten!
Mobile Giving Foundation Text Donations from February 2018.
Marna and Nicholas Kern Thank you to the newlyweds who donated the $280 collected from the dollar dash at their wedding!
Michigan Department of Corrections Thank you to the Michigan Department of Corrections, who collected donations and donated $365 for Bind Up Batten!
Birthday Bash for Batten Thank you to Kate Votava and Craig Hamilton of Chicago, who hosted a Birthday Bash for Batten and raised $1,300 for research!
Chel-Belle Bender Facebook Fundraiser in support of Bind Up Batten!
Blaire Albring Facebook Fundraiser in support of Bind Up Batten!
Adrienne Kersey Facebook Fundraiser in support of Bind Up Batten!
Mark Mathias In Honor of the Klein Family!
Emily Klump Supporting Bind Up Batten!
Eddie Huber In support of a strong, resilient family and to Binding Up Batten!
Matt McGraw Supporting Bind Up Batten!
Blaire Albring Facebook Fundraiser in support of Bind Up Batten!
Adrienne Kersey Facebook Fundraiser in support of Bind Up Batten!
Chel-Belle Bender Facebook Fundraiser in support of Bind Up Batten!
St. Patrick’s Fundraiser Thank you to everyone who attended and donated to this fundraiser. With your help and generosity the event raised $5,436 for research!
Arthur Martin Supporting Bind Up Batten!
Carol Richmond In memory of your Dad/Grandpa. Lewis Solo, may he rest in peace. From your coworkers at University of Michigan Health System, OTPTTR
Molly Rippke To paraphrase Gandalf (one of the two greatest wizards of all time) we don’t get to decide what happens to us, “all we have to decide is what to do with the time that is given to us.”
Michelle Molnar In honor of the Klein Family, c/o John and Terry Klein!
Cathy Tippenhauer In honor of Sophia Fernandez’ First Holy Communion!
Bishop Fenwick High School Jean Collection Fundraiser in support of Bind Up Batten!
Joseph Klein Supporting Bind Up Batten!
Matthew Shank Supporting Bind Up Batten!
Deborah Barnard Pulling for you, Charles Klein! (From another PT and the mother of an Orthotist)
Brian Paulson Supporting Bind Up Batten!
Dawn & Andrew Hoffman Supporting Bind Up Batten!
Jean & Richard Brey Supporting Bind Up Batten!
Cathy Tippenhauer Thanks to Patti Bisher!!
Ed Steinman & Rita Mitchell Supporting Bind Up Batten!
Dolores Czerniak Supporting Bind Up Batten!
Kristen Kirkland Supporting Bind Up Batten!
Jessica Miller Keep up the great work Jo and family!
Priyagi Mehta Lots of love to Charles and your family.
Abraham Dane May God strengthen your family and show you his grace. Praying for your whole family!
Erin Wallace Behind you all the way!
Angela Lefere Supporting Bind Up Batten!
Jo Klein Let’s move some miles to blow up Batten!
Sophie Manning Supporting Bind Up Batten!
Lynn Jasin Chris and I are thinking of you all. Our thoughts and prayers go out to Charles and the entire family.
Sarah Block Lots of love to you and your family, Jo.
Trisha Guerrero To a beautiful boy and a wonderful cause worth fighting for <3
Dorothy Apardian Supporting Bind Up Batten!
Don & Dolly Smith Foundation Supporting Bind Up Batten, courtesy of Jan Smith!
Jean Korcsog Praying and hoping they find a cure for this disease.
Wynn Curry Supporting Bind Up Batten!
Laura Bethard Supporting Bind Up Batten!
Justin Engel Supporting Bind Up Batten!
Anthony Hays Supporting Bind Up Batten!
John Lien Supporting Bind Up Batten!
Cara Rawlins Supporting Bind Up Batten!
Betty Robenstine Supporting Bind Up Batten!
Liz Hartley Supporting Bind Up Batten!
Kate Votava Lots of love to our buddy Charles! And to Gus, Leu and Henry! And all of the Kleins and Tipps! We know how strong all of your are and are sending our positive thoughts your way. xoxo
Tim, Riv & Liv Klein Supporting Bind Up Batten!
Margaret Michel Keep the Faith.
Meghann Houser Thinking of you and your family.
Abigail Mencotti All of you are in our thoughts and prayers.
Holly Houser Supporting Bind Up Batten!
John & TJ Klein Together.
Anonymous Donor Supporting Bind Up Batten!
Rachael Craig Supporting Bind Up Batten!
Holly Shuart Supporting Bind Up Batten!
Ric Eakin Supporting Bind Up Batten!
Holly Mierzwiak Supporting Bind Up Batten!
Sophie Manning Supporting Bind Up Batten!
Bridget Riehl Supporting Bind Up Batten!
Colleen Crowley Supporting Bind Up Batten!
Amy Klingler Supporting Bind Up Batten!
Harriet Jones Supporting Bind Up Batten!
Abigail Patricia Supporting Bind Up Batten!
Hendrika Lietz Supporting Bind Up Batten!
Ann Riehl Supporting Bind Up Batten!
Emily Elizabeth Supporting Bind Up Batten!
Dawn Allen Supporting Bind Up Batten!
Lisa Aaron-Laco Supporting Bind Up Batten!
Katelin Lott Supporting Bind Up Batten!
Natalia Fernandez Supporting Bind Up Batten!
Kelly Riehl Supporting Bind Up Batten!
Rivka Razon Happy Birthday Jo! Love you so much!