Monday, April 21, 2008

Schwann's Fundraiser...

As you may know, Max was born with a rare metabolic disorder, called Methylmalonic Acidemia and Homocysteinuria, also known as, Coblamin C deficiency. We have worked closely with his doctors to maintain his health, and in the past year, he's been entered into a study at the National Institutes of Health in Maryland to learn more about his disorder, and work towards better treatments, and maybe one day a cure. Max has been quite affected by this disorder, but he has responded incredibly well to the treatment. It is just in the past year we've seen him grow and develop more than he has to this point. We're getting to know more families who also have children with Cobalamin C, and other metabolic diseases, through a family group with the Organic Acidemia Association. This is exciting, because it offers a support group for families just like us.

I wanted to tell you about something we are participating in. A Schwan's Fundraiser to raise money to attend this year's Metabolic Conference in Pittsburgh, PA, in July. The conference brings together many families from all over the world whose children suffer from very rare metabolic disorders. At the conference, families and affected children are educated by researchers and physicians on ways to manage and treat their specific disorder. It is also a time where affected individuals can socialize with others who suffer from the same or similar disorder. I would very much appreciate your support in purchasing items from Schwan's to assist our family's attendance. If we raise enough, we will go to the conference, but should we not be able to go, all of the funds raised will be put towards another family who can not afford the expenses to attend.

This fundraiser will go from 04/21/2008 through 05/19/2008. There is no tax and no shipping for purchases; and items will be delivered to your home or office by a Schwan's refrigerated truck or shipped on dry ice at no cost to you.

Please go to this Schwann's link and click on the "Go Shopping" icon, located on the left hand side of the page. When the page opens, please list our Campaign ID# 1005432. You will be given the opportunity to list Max's name right before check out so that we get credit for your purchase. It is important to put Max's name so they know where to put the finds towards.

If you have any questions, please contact me. And please feel free to forward this to others if you wish. Remember the last day to purchase items will be 05/19/2008.

Thank you in advance for your support. We really appreciate it.


Below you will find a bit of information about Max's disorder. You can read all about it on this webpage:
Cobalamin C deficiency


What causes MMA+HCU?

In order for the body to use protein from the food we eat, it is broken down into smaller parts called amino acids. Special enzymes then make changes to the amino acids so the body can use them. In the same way, fat from the food we eat is broken down into fatty acids that the body can use for energy.

MMA+HCU occurs when one of these special enzymes is either missing or not working properly. The job of these enzymes is to change vitamin B12 (also called cobalamin) into a form that the body can use. When the body is not able to use vitamin B12 correctly, it causes homocysteine, methylmalonic acid and other harmful substances to build up in the blood. This can lead to serious health problems.

There are a number of forms of MMA+HCU. The most common form is called Cobalamin C deficiency (CblC). Rarer forms include Cobalamin D deficiency (CblD) and Cobalamin F deficiency (CblF).


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