Help us raise money

Diamond Blackfan anemia (DBA) is an extremely rare, bone marrow failure disorder for which there is no cure.  My niece Monroe was diagnosed with DBA at 6 weeks old and receives blood transfusions every 3-4 weeks to survive as her body is incapable of producing red blood cells.  Monroe has endured many tests, including MRI's, bone marrow biopsies, PICC line insertions, adverse effects from steroid treatments, and countless IV pokes and blood draws.  One of the main risks from the chronic blood transfusions is iron overload, which accumulates in the liver, heart, and eventually the endocrine organs.  Iron overload eventually culminates in death at a young age.  The only other curative treatment for DBA is a bone marrow transplant (BMT) which comes with a long list of potential complications, including death.  Sadly, Monroe does not have a sibling BMT match which alone greatly increases her risk of complications if we were to move forward to a BMT with an unrelated donor.

With the money we raised last year, the Canadian DBA was able to help fund medical research progressing in Sweden at the the Lund University.  Over the last couple of months, Meghan & Eric have been talking closely with the scientists and medical professionals in Sweden and New York.  23 years ago, this team started studying  gene therapy for DBA and they are specifically focused on the RPS19 gene which is Monroes gene mutation.  They have made incredible strides in the last few years and are going to clinical trial on humans within the next few months.  As you can imagine, gene therapy comes with astronomical costs (approximately $1-$3 million per patient) and we are looking to support this initiative.  Their initial goal is to perfect gene therapy treatment for the RPS19 gene, which will then enable them to continue down the path of treating all DBA patients with other gene mutations, along with other hematologic bone marrow failure disorders. 

Having the potential option of gene therapy, has given our family the gift of HOPE for the first time since Monroes diagnosis.  

Check out this short video that captured last years event!

https://drive.google.com/file/d/1FYNCpUa8JGuNJXGaA6ArVPlTdCXmFtfZ/view?usp=drive_web

All donations over $20 will receive a tax receipt.  

2^nd Annual Calgary DBA Dash

September 10th, 2023

Race start time: 3pm

Park at weaselhead parking lot at 66st and 37 ave SW

Post race party 2 blocks away (6813 Locke Ct SW) 

Come enjoy live music, refreshments, food trucks and prizes!