Status of the 2024 Egg Hunt
The OPTN Egg Hunt Fundraiser has been a beautiful journey for our family, and we will cherish these memories for the rest of our lives. This event has blossomed over the years, becoming bigger and better each year. Unfortunately, all good things do come to an end. The 2023 egg hunt was our last year hosting. Your generosity and kindness toward this our family and this fundraiser have touched me deeply. I want to express my heartfelt gratitude for the support you all have given us. Our family, friends and Bedford community have graciously gone above and beyond for my family and foundation. Thank you to you, I am truly grateful.
2009 photos of Nicholas at the first OPTN Egg Hunt
Our Promise to Nicholas Foundation in the Future:
Looking back at our journey to Our Promise to Nicholas Foundation fills me with pride and honor. I see our charity as a gift from you, our family, friends, and community. Giving us a purpose, passion, and perseverance to not give up. Rolling into 2024, our foundation will be turning 15 years old in April! Together we have raised 1.4 million since 2009. This is from over 40 different fundraisers. November 2024 we proudly will be hosting our 8th annual Translational Scientific Conference for the Management of all Batten disease. Here the elite Batten scientists come together from all over the world joining forces toward this cure. We have had some setbacks in treatments due to the 2020 pandemic and changing economy, but we will not give up and will continue in the fight against Batten Disease!
The future of OPTN is not slowing down. It will look different as we will have a different approach in raising funds. We still need your support. Please continue to follow our web site and social media. We hope you and your families have a wonderful holiday season and good health in the new coming year 2024
BDSRA Summer Family Conference July 12-July 14, 2024
We will be attending the BDSRA Family Support conference this year July 12-14 in St. Louis, Missouri. It will be our 10th year volunteering/working in the affected kids care room. I was joined by sisters: Meghan, Bridget, Erin Kelly and Hannah Euler. We have a lot of fun in our room by making lots of arts and crafts, play games, play with toys – that is borrowed by fellow batten families, we dance, sing and listening to music/ or movies and sometimes we have the opportunity to have a visit by the local service dog organizations. Our Promise to Nicholas Foundation is proud to sponsor this affected childcare at the conference. It gives the parents or caregivers an opportunity to meet, attend the conference lectures, learn about the disease, meet other families going through the same journey, learn about possible treatments or trials their child can be enrolled into and learn how to care for their child. These two days of affected childcare gives the parents a small break in their day to take a nap, get a coffee, chat with friends or just take a few hours to relax. We are grateful for support and sponsorships toward this childcare room.
How can you help us at the conference?
We will take any kind of donations of the following before June 15, 2024- We will bring this to the conference with us and give it to the families
Children’s liquid Tylenol or Advil or children’s chewable tablets.
Children Toothpaste and Toothbrushes
$25 Amazon Gift Card or $25.00 to OPTN (on our web site) – for OPTN to purchase Art supplies for the affected children’s rooms
8th Translational Scientific Conference for the Management of all types of NCL
Date To Be Determined- Possibly Fall 2024- Please Check back