2024 UNITE WALK (Brookfield, IL)

Dear Friends and Family,

This is the 9th year that CHRIS & JOHNNY'S CREW is participating in the Unite For Bleeding Disorders Walk (fka IL Hemophilia Walk), a fundraising event to support people living with bleeding disorders like our Chris & Johnny with Hemophilia A Severe. Inherited bleeding disorders are a life-long condition. Currently there is no cure, but scientists are actively engaged in finding cures and improving treatments.

(Little Johnny's bruise/bleed)

Over Chris & Johnny lifetime, we have made exciting breakthroughs advancements with treatment options. We are no longer limited to intravenous infusions treatments 2-3 times / week. Hemophilia A patients have access to a subcutaneous shot (under the skin like used for diabetes) since 2017 which can be taken as infrequently as every month. There is an exciting new factor VIII med that has a 40 hour half-life where tradition factor VIII meds have between 8-12 hour half-lives. Gene therapy is also available for adults with Hemophilia A which enables hemophilia patients to create their own factor VIII to clot more efficiently. These are HUGE game changers.

(Johnny getting his infusion)

Think about this.... Johnny (no longer little Johnny since he's 4'11" 😯) has had over 800 infusions into his tiny veins to help him live a fairly normal lifestyle, clot and heal properly. It is not uncommon for inhibitor patients, like Christopher, to have to infuse every day in attempt to get the body to stop rejecting the medicine that they need for their blood to function properly. Luckily, Chris has been able to use the subcutaneous med to give him a better quality of life.

(Just one of Chris's many hospital visits with his little cousin Johnny by his side. )

We feel extremely blessed to have access to world class treatment and the support of the bleeding disorders community to help us cope & navigate living with a potentially life threatening chronic medical condition. These are just part of the reasons why WE are raising money and hope that we can count on your support of this exciting event! Thousands of families in our community, and across the country will benefit from your support and the success of the UNITE for Bleeding Disorders Walk.

(Johnny's hospital stay for a dental treatment.)

My personal goal is to raise as much as possible for this worthy cause. I’m asking for your help! Will you make a tax-deductible contribution by donating what you can? It’s fast and easy to make a donation right here on my fundraising page. Funding goes summer camp programs, emergency assistance, education and advocacy for the LOCAL bleeding disorders community.