A complex disease requires a complex approach to treatment and support. That's why we have several recommendations and options on how you can donate to make a difference.
We spent 111 days in the hospital, and unfortunately, long hospital stays are common for Hurler patients. During those long and confined hours an iPad is used for many things; sound machine, distraction, communication home, entertainment, calming mechanism, education, and so much more.
2. Bone Marrow Donation
Being a bone marrow donor can save the life of a child. While bone marrow donations help many more lives than just Hurler patients, for a Hurler patient that does not receive a bone marrow transplant, their life expectancy is only 5 - 10 years.
3. Cord Blood Donation
Are you pregnant? Do you know someone who is? Did you know that you can donate your cord blood and it can have the same impact as a bone marrow donation? Check out our Bone Marrow/Cord Blood Donation page for more information.
BE A DONOR
While a bone marrow transplant is the standard of care for Hurler patients, it is by no means a cure. The average life expectancy after a bone marrow transplant is only in the 20s.
So what options do we have? Thankfully, we are not out of hope, in fact, modern medicine is getting closer each day, but that research needs funding!
Both Stem Cell research and Gene Therapy hold a lot of promise for Hurler patients, but what's even better, the research for these two therapies will help solve many serious diseases.
Your financial contributions to The Kennedy Ladd Foundation are used to:
1. Fund research to find a CURE
2. Raise Awareness for MPS
3. Provide iPads
Any monetary contribution that you can make will go to help patients now, and in the future.
FUND THE CURE
Are you on social media?...don't answer, it's ok, we already know. While social media has it's questionable attributes, there is at least one area that is great, and that is its ability to spread information quickly. When used for a good cause, this can make a huge difference.
So, here is an action that everyone can take, like our FaceBook page:
The Kennedy Ladd Foundation, Inc.
We would love it if you'd share the page with your friends, but even by just liking our page you will make a difference.
For those of you more socially connected in the physical world...we are actively engaged in spreading the word about Hurlers and helping people make a difference. I (Allie) am available to speak at your church, business, booster, or any other group that you think would benefit from hearing our journey, message, and mission. Just fill out a contact form and let us know.
SPREAD THE WORD