USNA Class of 1986 Fundraiser for Tyler’s Mission

USNA Class of 1986 Fundraiser for Tyler’s Mission

The weekend of 7-10 October marked the 35th Reunion for the Naval Academy Class of 1986. The first event of the weekend was a golf outing at Compass Pointe Golf Course in Pasadena, MD. Seventy-seven classmates gathered to play golf and swap seas stories. But more importantly, the occasion was an opportunity to give back to a classmate in need. Through the selling of various on course items (mulligans, 2′ of string, opportunity to tee off from the fairway on one hole), and a raffle event after the tournament featuring items donated by classmates and local businesses, the Class raised $4862 for Tyler’s Mission in support of the son on classmate Jim Kim. It was a perfect ending to a perfect day. The Class could not be more inspired by the way Tyler lives his life and was honored to make this donation to his fund. Go Tyler! Beat Batten!

 

Hope on the Green 2021

For the past 12 years we have been blessed with phenomenal weather, enthusiastic golfers, and energetic volunteers. Yesterday was no exception, we gathered once again in celebration of HOPE, with our collective mission in mind… #SaveWill . Thank you to everyone who joined us at our 2021 HOPE on the Green. We look forward to sharing our recap photos online this week!

Thank you to our Photography sponsor:

Hughes & Cozad Orthodontics

BBDF Welcomes Delaney’s Dream

BBDF is proud to partner with Delaney’s Dream from West Virginia and welcomes them to our family of donor advised funds. By connecting affected families and communities, we are able to pool resources and better position ourselves to increase awareness and accelerate research. Delaney lost her battle with juvenile Batten disease on Jan. 21, 2019—less than 4 years after her diagnosis—but her family and friends remain dedicated to raising awareness and finding a cure for juvenile Batten disease. We are grateful for their continued interest and desire to help families and children still living with this disease.

“This quote, ‘It’s the little things that make life BIG,’ describes Delaney perfectly”, Delaney’s mom, Janet, shares. “It didn’t take much to make Delaney happy.”

Read more to learn about Delaney and her family.

BBDF Welcomes Sophia’s Dream

BBDF welcomes Sofia’s Dream to our family of donor advised funds. By connecting affected families and communities, we are able to pool resources and better position ourselves to increase awareness and accelerate research. Sofia, her family and BBDF share the same dream – to find a cure and eradicate juvenile Batten disease – and together we will. We are so grateful to have Sofia’s family as part of our community.

Sofia was diagnosed with juvenile Batten disease (CLN3) in 2015, and despite her vision loss and poor memory she remains eager to explore the world alongside her family, including her twin brother, Max. Click here to learn more about Sofia.


BE Project – Thank You from the Bensons

BE Project – Thank you from the Bensons from Beyond Batten Disease Foundation on Vimeo.

In 2016, after 8 years of funding research for Batten disease, our research team was ready to take the next steps to advance our discovery of a treatment to slow the progression of Batten disease. As you know, The Be Project was launched to raise $6 million in 24 months in order to validate their findings, create patient registries, and advance a host of other necessary steps to prepare for FDA engagement and clinical trials. And, we did just that. WE DID IT!!! We achieved our goal, and we hope you feel so proud and take ownership in this enormous accomplishment!

Let’s Welcome Bianca and Her Son, Manuel, to the BBDF Community.

Bianca Vidal recently wrote to us and was kind enough to let us share her story. Let’s give her and her son a warm welcome.

“My son Manuel is a 17-year-old young man who was recently diagnosed with this terrible disease. Even though at 10 years old he started losing his vision, I never imagine it could be something else. Last year his health started to decline dramatically – it was then that a Doctor found the disease in him. He is declining faster than I thought. He can barely walk and talk now, and he does not recognize who I am most of the time. It is heartbreaking to see him like this. Even though he has good and bad days, his positive attitude is always there. And he always has a big smile for everybody and loves to show off his ‘muscles’.”

Our Son Ollie – A Mother’s Story

by SUSIE EGR

This is our handsome son, Oliver James Egr. He is a big piece of our “why” and our superhero. He turned the big thirteen a few months back. When he was born I remember saying “Thank you God for all the abundance in our lives and for this sweet baby boy. He is perfect in every way and has now completed our family ”. He was the typical little boy- ornery but so dang cute. When he started kindergarten we noticed he kept sitting close to the TV and he wasn’t always paying attention. We soon learned he had visual issues. That led to months of additional neuro and genetic testing. I vividly recall that horrific day we received his official diagnosis.- Batten Disease. The genetic company called me on the phone while we were driving to Iowa City for an eye specialist appt for Ollie. To say it took my breath away is an understatement. Darin pulled the car over while I continued to listen on the phone. Ollman was singing “the ants go marching one by one” in the backseat (Not a care in the world.. while ours was being turned upside down) tears instantly flowed from my face and Darin just knew the results weren’t good. I remained quiet as I didn’t want to worry Ollie. That was the longest drive of our lives. After I got the news Dare and I just sat there holding hands with tears streaming. I felt helpless. “No cure….Fatal” is all I heard and it just kept playing over and over in my head. 

Ollie lost his complete vision 6 months after that appointment. Over the years we have seen this disease not only rear it’s ugly head in our son but take the lives of so many innocent, sweet kids. These affected families have became our extended family now. THIS HAS BECAME PERSONAL. 

My faith is strong and I remind myself frequently that our loving Father loves this child more then I will ever comprehend and he walks beside us daily as we fight the good fight. We feel his presence and see him through the kindness of others. That gives us hope. As parents we will never stop advocating for Ollie and the Batten community because they need us! What also gives us hope is putting our efforts towards funding a cure. We are so close!

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