Dear friends and family,
As many of you know, we are closely tied to the bleeding disorders community since Oliver has a one-in-a-million variety—von Willebrand Disease type 3 (VWD3). This fall we are participating in a walk to raise funds for the National Hemophilia Foundation (NHF), which serves people living with or caring for others with all kinds of bleeding disorders, including VWD3.
Having a bleeding disorder means that there are proteins—factors—missing from the blood, so the blood doesn't clot properly, leading to frequent and excessive bruising and bleeding. Imagine that recent paper cut you thought nothing of bleeding for 45 minutes. Picture your young child losing his first tooth and having to get an infusion of factor (which is intravenous) in order to stop the bleeding. Think about never being able to leave the house without a cooler full of medicine and injection supplies because if there's an accident of some sort (and it doesn't have to be as traumatic as a car accident), the hospital is not likely to have such specialized treatment on hand. Consider being a parent arrested because a well-meaning bystander thought your child's very large bruises indicated mistreatment, and you didn't have the doctor's letter verifying your child's condition. Envision visiting the ER so often you're on a first-name basis with the full staff. Wouldn't it be wonderful to not have to deal with such things?
- If left untreated or undertreated, bleeding disorders can cause irreversible disability or even death.
- Annual treatment for an adolescent boy with a severe bleeding disorder can easily exceed $250,000, and some families can face out-of-pocket expenses of up to 20%.
- Many people, especially women, remain undiagnosed and suffer needlessly because they are unaware of the signs of a bleeding disorder.
Money raised in this campaign will
- fund research toward better treatments and, hopefully, one day, cures;
- provide education to help people with bleeding disorders avoid debilitating complications and live longer, more active, and healthier lives;
- conduct advocacy initiatives at local and national levels to help ensure access to medical care and equitable insurance for all;
- build awareness of bleeding disorders and promote early diagnosis; and
- advocate and create awareness for blood safety.
We invite and encourage you to support Team Mojo in any way you can. You can contribute financially, or, if your schedule permits, you can join the team to walk with us in Lincoln Park in Chicago and collect contributions from your network of friends and family (or just join us for a beautiful walk in the park). To participate any way you'd like, please visit Team Mojo.
If you have any questions about von Willebrand Disease, bleeding disorders in general, or the walk (or Oliver!), please do not hesitate to contact us. We appreciate any support you can give in this drive to help people with bleeding disorders lead healthier, more carefree lives, striving toward living without any limitations.
Many, many thanks for your compassionate support.
Margo, Joel, and Oliver
The National Hemophilia Foundation is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. "Coming together is a beginning. Keeping together is progress. Working together is success."