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 once again participating in the Unite for Bleeding Disorders walk on Saturday, 19 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 of years have seen tremendous advances in medicine, including new, more easily administered treatments that one day may be fitting for Oliver to use.
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, 19 September. Contributions can be made at Team Mojo. If you’d like to join Team Mojo, just let me know – we’d LOVE to have you!
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 (Team Mojo)
Ways you can help:
- Donate: Contribute whatever you can. No amount is too small!
- Spread the Word: Share my fundraising page with your friends, family, and social networks. Let’s spread awareness so we can raise more!
Thank you for standing by us in this effort! Your support means the world to us!
