BDSRA Family Support Conference July 18-21, 2019 Denver, CO

Another fantastic BDSRA Batten Disease Family Support Conference in the books. This year the 2019 conference was located in Denver, Colorado. Thank you to our Our Promise to Nicholas sponsors and volunteers supporting our events in NH and MA. Some of the money we raise goes toward this conference for nursing care support. RN and LPN’s are hired to help us care for the kids affected with Batten Disease. We are also thankful to have the support by many volunteers in our affected child care room (parents, family, friends and also nurses from previous conferences- came to help us at this one in Denver)- we feel very blessed by the support. Thank you to the Benroth Family and Friends for your tremendous support toward child care. We loved having you with us this year!

Thank you to Meghan Kelley, Bridget & Chris Kelley, Erin Kelley and Hannah Euler for joining us every year with smiles, love and kindness toward our kids. You have brought this room to a new level each year with crafts, keepsakes and care. We stayed busy with the kids doing many many art projects, playing with toys, running the halls, throwing balls and watching movies. We even build a fort out of tables, chairs and table clothes- because why not. As you see in the photos we had a blast and hope the kids did too!. We were visited by therapy dogs and 1 therapy cat.

The kids also had a blast in a music therapy session! (sponsored by Ethan’s Reason Foundation)

Thank you to Amy and Dan Noyes from Vermont for obtaining a huge donation of animal socks for the kids. They were loved.
Thank you Pauline King for your hand crafted hats!
Thank you Southern National Charity League of New Hampshire (Mother’s and Daughters) for making picture frames and blankets for us to bring to the kids.
Thank you to Patrick Ellis and Leading Edge Chapter BNI of New Hampshire for donating Children Tylenol and Motrin for the kids!
Thank you to the Batten Sibling (whom I don’t know her name) from Denmark who professionally painted the kids faces. We loved it and so did they!
Thank you to the BDSRA, Pharmaceutical Companies and Family Foundations like ours that support the BDSRA Family Support Conference.
We missed the families who could not attend this conference this year and our hearts are heavy for the children who have passed away since our last conference.