Announcing the CFUCDF/Sing Me A Story Partnership:
The Sing Me A Story Foundation and Connecting Families UCD Foundation have partnered together and we are honored to be named as the organization representing Urea Cycle Disorders. SMAS brings awareness to the communities of the partner organizations by receiving story submissions from children affected by rare diseases within that community. SMAS uses top musical artists in the industry to transform those stories into songs which are then made available by donation on their website.
For those who may be unaware, there is currently a song about a girl with a UCD which is available now. The partner organization receives a portion of those proceeds and we have chosen to use the current song titled “Whatever She Believes, She Can Be” to go towards helping UCD kids and their families with travel expenses for getting to UCD Kids Camp 2018 this year.
“Whatever She Believes, She Can Be” is the title of the song by Lilly, who is one of our own in the UCD family. Lilly is a 15 year-old girl with a Urea Cycle Disorder and thanks to the Sing Me A Story Foundation, Lilly’s song is now being shared with the world. Lilly’s song is performed by country music star Cris Jacobs (watch the videos of Lilly and the performance of her song by Cris Jacobs below).
The song is currently receiving incredible support and as we get closer to our camp, we are asking everyone to please consider making a donation to the downloadable song which helps these families get to this one-of-a-kind camp created for families affected with Urea Cycle Disorders. Your donations to the song helps these families get to this camp and make new connections to others just like them.
Many UCD families have never been face-to-face with another family with the same illness. In the rare disease world, connections to others with the same illness are extremely important because when they get the opportunity to meet other survivors like them, they receive a special hope that is most powerful when it comes from someone who walks in their shoes. CFUCDF believes everyone with a UCD should have the opportunity to meet others just like them in order to grow their UCD families.
By making a donation to Lilly’s song on the SMAS website you are directly supporting the Urea Cycle Disorder community of families and children so they can receive this chance to be connected to others just like them.
The new partnership between CFUCDF and SMAS will make it possible to bring more programs and benefits to UCD families who will benefit by making new connections to resources, programs, education, and most importantly, each other.
Thank you very much for your love, support, and hope. Click the link below to help a family now.
Connecting Families Urea Cycle Disorders Foundation
FYI Friday from CFUCDF: For those who may have missed it, UCD Kids Camp 2018 is officially on the calendar for the last week in April. Those who wish to go can register on our website under the UCD Kids Camp 2018 Registration tab at ucdfamily.org.
Did you know that the Rare Carousel of Possible Dreams fundraiser is still going until March 15th? We are still raising funds for family travel stipends to help get our UCD families to camp. Through tremendous support from friends and the community, Connecting Families UCD Foundation has raised enough money to pay for the camp itself, but there are still families who need travel assistance so they can attend.
CFUCDF just received a private donor who is willing to match $1,000 dollars towards travel stipends for these children to attend our camp. When you donate to the Rare Carousel of Possible Dreams fundraiser, your donations go twice as far now as $1,000 becomes $2,000 by March 15, 2018. That’s less than a week away. These donations directly assist families with travel costs, you can help by donating here: www.festivalofchildren.org/site/TR/Events/General…
Some of these children affected with a Urea Cycle Disorder have written to us recently and would very much like to go to camp, but they need help getting there.
Take this boy pictured below for example, he has one of the 6 urea cycle disorders and his mother tells us, “my son gets sad because he feels like he is the only one who has it.”
You can help put a smile on his face by helping him get to camp this year and be surrounded by other kids just like him.
Your gifts give this boy, and others like him, the chance to see that they ARE NOT ALONE. Please consider donating to the Rare Carousel of Possible Dreams and your donation will give him and his family the chance to attend UCD Kids Camp 2018. Your donation is tax deductible and EVERY LITTLE BIT HELPS!
CFUCDF wants to thank you in advance for giving these families more hope,
We’re excited to be part of the first #RAREis Playlist song. The story by 15-year-old Lilly was transformed into song - downloads benefit the UCD community. Looking forward to more songs from @HZNPplc, @GlobalGenes & @SMASFoundation to come in 2018. https://t.co/nm0QYcAW61
. "Wow! Connecting Families is so close to raising enough money to support their DREAM! Only 2 more days to go!"
Final hours to show your support❤️
Thank you, thank you to all who have stood by supporting us😘 https://t.co/iVQksMu2e2