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 on Saturday, 21 September, to raise funds for Bleeding Disorders Alliance Illinois (BDAI), which serves people living with or caring for others with all kinds of bleeding disorders, including VWD3.  To hear this in Oliver's own words, please click here . 

The last couple years have seen tremendous advances in medicine – such as significantly longer half-lives, allowing for less frequent treatments, and subcutaneous injections rather than intravenous infusions, thus greatly increasing quality of life for those needing factor regularly.  Some of the greatest advances have come in gene therapy, where, essentially, correct information replaces faulty information.

Most of this research is being done in hemophilia, where symptoms and outcomes are relatively predictable (if there are no inhibitors, that is, which sabotage treatment efforts).   VWD, particularly type 3, is far less predictable, and there are only an estimated 350 VWD3 patients in the US, so available data and research is very limited.

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.  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.  Envision visiting the ER so often you're on a first-name basis with the staff.  Wouldn't it be wonderful to not have to deal with such things?

Quick facts:
 - If left untreated or undertreated, bleeding disorders can cause irreversible disability or even death.
 - Annual treatment for an adolescent with a severe bleeding disorder can easily exceed $250,000.
 - 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 the walk on Saturday, 30 September.  Contributions can be made at 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