Donating directly to the Fries Supplemental Needs Trust provides a way for the Fries family to support their Batten girls directly. The funds in this trust are designated to help with travel expenses for memory making, and for medical travel, also for any other expenses that arise such as home modifications, technological resources, accessibility, therapy and other medications and treatments not covered by insurance, etc.
The Beyond Batten Disease Foundation was established to eradicate juvenile Batten disease by raising awareness and funds to accelerate research for a treatment or cure. When you donate to the Rare Sisters Fund through BBFD, you are donating directly towards medical research that is working towards finding treatments and cures for CLN3 Batten Disease.
The Rare Sisters have been so blessed to have so many "villagers" help raise funds. We would love to partner with you or your business if you have any ideas for fundraising. No fundraiser is too big or too small. Please let us know what you have in mind by using this form. Please include all details you have, such as date, place, event details, etc.
Are you a realtor, or do you know one? (of course you do)
Hey Realtor! This is where you can help. By partnering with Rare Sisters you will help raise awareness, and funds for treatments and cures for all Batten kids. When you partner with Rare Sisters as a realtor, you will be provided with a yard sign for your listings that advertises your listing as a Rare Sisters Batten Benefit Home.
In return, we ask that you donate a portion of the proceeds from the sale of that home to the Rare Sisters fund through the Beyond Batten Disease Foundation. The portion size is up to you, although we recommend a minimum of .10% per sale. We also encourage you to ask your clients if they would be willing to partner as well with a matching donation.
We would like to have 25 homes with signs in their yard before the end of 2018. If you would like to partner with the Rare Sisters Fund through the Beyond Batten Disease Foundation, please click below, and we will get your signs out to you ASAP.