Care packages for kids and adults with CRMO!
We're so excited to be able to offer care packages for children and adults in need of some love and comfort. What started as a Girl Scout Project has turned into a passion for me and my family. We are spreading love and helping other families in need.
Request a care package
You can request a care package here.
Each care package is created especially for that person based on their likes/interests, types of treatments they are receiving, etc. Items that may go in care packages include: CRMO t-shirts; gift cards; books; journals and cool pens; a special toy or an addition to something they collect; drawing pads and pencils; craft projects; homemade rice heating pads (made in a theme that they are interested in, i.e., princesses, dogs, superheroes, etc.); a stuffed animal or game, and for those that receive infusions, injections or blood draws and have a hard time with these, a product called Buzzy. I was given a Buzzy when I started having bi-monthly injections, and it really helped with the pain. I learned to calm down and deal with getting the shots because I no longer needed to worry about the pain involved in these with the Buzzy.
To date, we have sent out 450 care packages. We would like to continue sending care packages, and donations play a big role in allowing us to continue this mission. We are so thankful that care package recipients, as well as others that believe in our mission, have offered to help us through donations, fundraising, and other means of support. We love the pay it foward idea. It feels good to be given a gift; and it feels even better to at some point be able to provide that same feeling to someone else walking a similar path.
CRMO Rare Bears
We are so excited to partner with RARE Science, Inc. in bringing Rare Bears to all CRMO Warriors around the Globe. If you are interested in receiving a Rare Bear made especially for you, complete and submit the form here: www.rarescience.org/kailas-komfort/.
"We Finish Together" CRMO Warrior Race Medals
All medals come from an awesome non-profit called, We Finish Together. They are donated by a community of runners, swimmers, singers, and triathletes all across the US, and then are decorated with an uplifting handwritten ribbon message and handmade note by our army of volunteers to remind CRMO Warriors that they are supported and cared for, and that they are not alone. Its a wonderful reminder that you are winning at getting through the trials and tribulations that CRMO can bring. Request a medal here.
Superstar Siblings Program
Its not always easy being the sibling of a child with a chronic illness. I walk on both sides of the fence: I suffer from CRMO, and also have a sister who suffers from many very complex medical issues. Siblings often feel left out or even forgotten because their ill sibling requires more care and attention from parents. We want to be able to help make your superstar sibling feel special by sending them a mini care package. Click here to nominate your sister for a special Sibling Care Package. Click here to nominate your brother for a special Sibling Care Package. If you would like to make a donation of items for either sister or brother mini care packages, please contact us.
CRMO Warrior Mom's - Mini Care Packages
"A mother's love for her child is like nothing else in the world. It knows no law, no pity, it dares all things and crushes down remorselessly all that stands in its path." ~Agatha Christie
It takes a special Mom to raise any child, but a Warrior Mom to navigate the rare disease world! We would like to show CRMO Warrior Mom's a little love; all you need to do is nominate them here.
For care information on your Warrior Mom Bracelet, click here.
CRMO Warrior Dad's - Mini Care Packages
"A good father is one of the most unsung, unpraised, unnoticed, and yet one of the most valuable assets in our society." ~Billy Graham
Let's show our CRMO Warrior Dad's a little love; all you need to do is nominate him here.
Want to make a donation to CRMO research?
CRMO Fund through Seattle Children's Hospital
Encouraging CRMO Research and Understanding
CRMO Families United
There is no way to explain how it feels to be a parent of a child who screams every day in pain because their bones are inflamed and breaking, and there is nothing you can do. As families of children and adults battling this incredibly rare and horribly painful disease, we realized early on how we need researchers on our side to help our loved ones battling CRMO (Chronic Recurrent Multifocal Osteomyelitis). We have partnered with the international CRMO Physicians group to collect data and push research forward. Currently we are raising funds to collect data from our CARRA Partners worldwide. The results of physical exams, pain and patient-reported outcomes as well as imaging studies will be compared across different treatment groups in order to determine the optimal treatment for children with this condition. Long-term follow-up of enrolled children is extremely important to understand whether the effectiveness of medicines is long-lasting.
Please help us raise much needed funds for this important work and to push for further research and an eventual cure! Your donation gives HOPE to those who are suffering!
To make a donation to this fund, please click here to be taken to the fundraising website.
The Ferguson Laboratory at the University of Iowa
Dr. Polly Ferguson, CRMO Researcher
Current research projects focus on determining the genetic basis of Chronic Recurrent Multifocal Osteomyelitis, SAPHO Syndrome and Lupus. To make a donation to this fund, please click here to be taken to the University of Iowa Foundation's Giving Page. Please make sure to choose "Other" in the Area to Support and indicate the Ferguson Laboratory in the Gift Instructions. More information on the Ferguson Laboratory can be found here.
2016 Holiday Charity
We had a very successful third annual "Be the Rainbow in Someone's Cloud" mini care package charity drive. This is our way to bring a little sunshine to the kids receiving infusions or dialysis during the month of December at Rady Children's Hospital, where I receive my monthly infusions. We made up and delivered 180 mini care packages and an additional 50 toy chest items, and have heard that they created quite a few smiles! Success!! Thank you to everyone who donated and helped us make this holiday drive possible!