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 such as Hemophilia A Severe like my cousins Chris & Johnny. Inherited bleeding disorders are a life-long condition. Currently there is no cure, but scientists are actively engaged in finding cures and improving treatments.
(Johnny's bruise from hip bleed when he was a toddler.)
Over Johnny's lifetime (10 years), there has been exciting breakthrough 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) which has been available since 2017. 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-life. 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!
Think about this.... John (no longer little Johnny since he's 4'11" šÆ) has had over 800 infusions into his tiny veins to help him live a fairly normal lifestyle, clot and heal properly. And 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 more properly. Luckily, Chris has been able to use the subcutaneous med to give him a better quality of life.
(One of Chris's many hospital stays with his lil buddy Johnny visiting. They were both in hospital at same time during this visit.)
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 in the hospital for a dental procedure. They kept him overnight for observation.)
Our goal is to raise as much as possible for this worthy cause. Iām asking for your help! Will you make a tax-deductible contribution by donating what you can? Itās fast and easy to make a donation right here on my fundraising page. Funding goes summer camp programs, emergency assistance, education and advocacy.
.jpg)
(Johnny is yellow climbing the rock climbing wall at Camp Warren Jyrch last year. )
Thank you in advance for your support. TOGETHER, WE WILL MAKE A DIFFERENCE!
Much ā¤ļø,
Emma
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 such as Hemophilia A Severe like my cousins Chris & Johnny. Inherited bleeding disorders are a life-long condition. Currently there is no cure, but scientists are actively engaged in finding cures and improving treatments.
(Johnny's bruise from hip bleed when he was a toddler.)
Over Johnny's lifetime (10 years), there has been exciting breakthrough 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) which has been available since 2017. 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-life. 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!
Think about this.... John (no longer little Johnny since he's 4'11" šÆ) has had over 800 infusions into his tiny veins to help him live a fairly normal lifestyle, clot and heal properly. And 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 more properly. Luckily, Chris has been able to use the subcutaneous med to give him a better quality of life.
(One of Chris's many hospital stays with his lil buddy Johnny visiting. They were both in hospital at same time during this visit.)
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 in the hospital for a dental procedure. They kept him overnight for observation.)
Our goal is to raise as much as possible for this worthy cause. Iām asking for your help! Will you make a tax-deductible contribution by donating what you can? Itās fast and easy to make a donation right here on my fundraising page. Funding goes summer camp programs, emergency assistance, education and advocacy.
(Johnny is yellow climbing the rock climbing wall at Camp Warren Jyrch last year. )
Thank you in advance for your support. TOGETHER, WE WILL MAKE A DIFFERENCE!
Much ā¤ļø,
Emma
Get The Word Out
https://www.uniteforbleedingdisorders.org/participant/CnJsCrew5