The Fries Sisters
On January 3rd, 2018, Cecilia and Lilly were diagnosed with CLN3 Batten Disease. Batten disease is a neurodegenerative disorder. There is no treatment, there is no cure, it is fatal. It is usually first diagnosed with vision loss. Eventually, they will develop seizures around age 9. Dementia symptoms including mood and behavior changes will present. Their muscles will weaken to the point where they will no longer be able to walk or talk and will be bedridden. Eventually, they will need a feeding tube as they will no longer be able to feed themselves. And then, eventually, they will die. The lifespan for this horrible disease is late teens to early twenties. Follow our journey at raresisters.org
Upcoming Events
Expect Miracles 5k
Sunday May 31, 2020
Westminster City Park
10455 N Sheridan Blvd, Westminster CO, 80020
Registration opens at 9:30
5k Starts at 10:30
1 mile fun run/walk follows 5k start
VANboree Carnival till 2pm
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. Rare Sisters is partnering with BBDF to find a cure for juvenile Batten disease for the Fries Sisters 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!
Rare Sisters has a raised a total of:
$102,238
What Supporters are Saying:
| Contributor | Comment |
|---|---|
| Michael Fesl | Supporting Rare Sisters Fund |
| Scott Leivian | Missed the 5K but there in spirit. |
| Robert Gormley | Supporting Rare Sisters Fund |
| Community Shares of Colorado | Supporting Rare Sisters Fund |
| Olivia Doyle | In honor of Sofia Martinez, our families are so grateful for the help Rare Sisters has offered and would like to help others as well through this donation. |
| Community Shares of Colorado | Supporting Rare Sisters Fund |
| Peter and Amanda Ambrose | Supporting Rare Sisters Fund |
| Maura Turner | What brave Girls and what a strong family. I’m glad Abby shared your story with me. Sending love and prayers to you all! |
| Community Shares of Colorado | Supporting Rare Sisters Fund |
| Community Shares of Colorado | Supporting Rare Sisters Fund |
| Community Shares of Colorado | Supporting Rare Sisters Fund |
| Mary Margeret Meyer | Supporting Rare Sisters Fund |
| Parvez Mahmood | Supporting Rare Sisters Fund |
| Tim Leduc | Supporting Rare Sisters Fund |
| Mobile Giving Foundation | Supporting Rare Sisters Fund |
| Ed Higuera | Supporting Rare Sisters Fund |
| Christine Branzanskas | You’re all so brave. Thank you for sharing your story. |
| Joan Eafanti | I’m contributing in honor of the Rare Sisters. God bless and protect them. |
| Sarah Norris | Supporting Rare Sisters Fund |
| Mobile Giving Foundation | Supporting Rare Sisters Fund |
| Tim Leduc | Supporting Rare Sisters Fund |
| Give Well Foundation | Supporting Rare Sisters Fund |
| Ron Galiffa | Supporting Rare Sisters Fund |
| William Prymak | Supporting Rare Sisters Fund |
| Sarah Norris | Supporting Rare Sisters Fund |
| Renee Loewen | Supporting Rare Sisters Fund |
| Cheryl Miller | Supporting Rare Sisters Fund |
| Meghan and Josh Wisell | All of Arvada is praying for you. |
| Denise Gutierrez | Supporting Rare Sisters Fund |
| Ellen and David Thorp | In Alabama visiting my mom, but wanted to support the gala and your family. Always praying for you all. |
| Vicki Capek | I saw your story on channel 4. Wishing you every hope possible. |
| Anna Krieger | Supporting Rare Sisters Fund |
| Katherine Benoit | Supporting Rare Sisters Fund |
| Katie Wolf Perkins | Supporting Rare Sisters Fund |
| Carol Guenzi | Supporting Rare Sisters Fund |
| Jean Ference | Supporting Rare Sisters Fund |
| Carrie & Grace Wallace | Supporting Rare Sisters Fund |
| Rockie Zalensky | Supporting Rare Sisters Fund |
| Candace J Frie | We are so sorry we cannot join you, but know the gala will be a great success. Love Bob and Candy. |
| Sarah Norris | Supporting Rare Sisters Fund |
| Pat Arch | Supporting Rare Sisters Fund |
| Susie Battler | You’re braver than you believe, stronger than you seem, and smarter than you think. -A.A. Milne |
| Leah Strassner | Supporting Rare Sisters Fund |
| Cheryl Fries | Supporting Rare Sisters Fund |
| Bright Funds | From Isabel Coberly in honor of Cecilia’s birthday |
| Greg Waters | Supporting Rare Sisters Fund |
| Sara Norris | Supporting Rare Sisters Fund |
| Mobile Giving Foundation | Supporting Rare Sisters Fund |
| Stephanie Serafin | Happy Birthday, Cecelia!!! We hope your day is wonderful. Love, your Florida cousins (Stephanie, Matt, Cameron, and MJ) |
| Kat Wasabi | Happy Birthday Cecelia!!! |
| Betsy Moran | Supporting Rare Sisters Fund |
| Mike Cooke | Supporting Rare Sisters Fund |
| Sarah Norris | Supporting Rare Sisters Fund |
| Connie Gormley Zaremsky | In honor of Jeanne and John’s 60th Wedding Anniversary. |
| Sarah Norris | Supporting Rare Sisters Fund |
| Christina Johnson | Supporting Rare Sisters Fund |
| Jimmy Corso | Supporting Rare Sisters Fund |
| Sarah Norris | Supporting Rare Sisters Fund |
| Timothy Leduc | We are amongst the many who are praying for your family. |
| Steph Cohen | Supporting Rare Sisters Fund |
| Dan Wolfe | Supporting Rare Sisters Fund |
| Sarah Norris | Supporting Rare Sisters Fund |
| Elizabeth Roberts | Supporting Rare Sisters Fund |
| Diana Walleigh | To the amazing Fries Family. Especially to the lovely and strong-willed Cecilia and Lily. Thank you for letting me be part of your treatment team. |
| Vanessa Thorsten | For Cecilia and Lilly Fries. Wishing you all the best! |
| Taylor McCormick | Supporting Rare Sisters Fund |
| St.John’s Evangelical Lutheran Church | Supporting Rare Sisters Fund |
| Pat Arch | Supporting Rare Sisters Fund |
| Robert Frie | Supporting Rare Sisters Fund |
| Matthew Eyser | Supporting Rare Sisters Fund |
| Christine Parks | Supporting Rare Sisters Fund |
| Nicholas Jones | Supporting Rare Sisters Fund |
| Cathryn Shibata | Supporting Rare Sisters Fund |
| Expect Miracles 5K | A community event in support of Rare Sisters Fund |
| Cathryn Fennelly | I was touched by your story and your desire to raise funds to help with research. I am the mother of one of the teachers at the girls` school. |
| Cathryn Shibata | Supporting Rare Sisters Fund |
| Christine Parks | Supporting Rare Sisters Fund |
| Matthew Eyser | Supporting Rare Sisters Fund |
| Robert Frie | Supporting Rare Sisters Fund |
| Pat Arch | Supporting Rare Sisters Fund |
| Taylor McCormick | Supporting Rare Sisters Fund |
| Margaret Quinn | Supporting Rare Sisters Fund |
| Sarah Norris | Supporting Rare Sisters Fund |
| Goodr Sunglasses Fundraiser | Supporting Rare Sisters Fund |
| Sarah Norris | Supporting Rare Sisters Fund |
| Peter and Amanda Ambrose | Supporting Rare Sisters Fund |
| Ball Matching Gift | Supporting Rare Sisters Fund |
| Sarah Golombek | Supporting Rare Sisters Fund |
| Daniel and Tanya Gormley | Supporting Rare Sisters Fund |
| Jennifer Stamper | Supporting Rare Sisters Fund |
| Donations Prior to Dec 31, 2018 | Supporting Rare Sisters Fund |
| Facebook Donations | Donations from November, 2018 |
| Rare Sisters Day | A community event in support of Rare Sisters Fund |
| Daniel J Gormley | Supporting Rare Sisters Fund |
| Jeanine Koontz | Supporting Rare Sisters Fund |
| Landon Smith | In honor of Pete Ambrose & his nieces |