Hope for the Holidays

If you find yourself in a frantic, last-ditch effort to tack a little Jesus on to this season's pagan parade of materialistic magic, instead of giving your friends one more candle they don’t need, your dad one more necktie he won’t wear, your grandma one more high-caloric health hazard, would you please consider the following options?

Dave’s Homeroast, coffee sold by the father of Clifford, a young man who is afflicted by the juvenile variant of Batten Disease, gives one hundred percent of the proceeds to BDSRA. Andy considers himself a bit of a coffee connoisseur, and he's a big fan of Dave's beans, especially the Nicaraguan blend. Purchasing coffee from Dave is one of those situations where a little hill of beans can make a mountain of difference.
Garrett’s Wings, a foundation that honors a little boy lost before age three, has promised to make a dollar-for-dollar match on all contributions to BDSRA for infantile Batten Disease research (donations must be marked Garrett’s Wings Challenge Grant and must be received by BDSRA before February 1, 2010). If a notice about the donation isn’t, by itself, sufficient as a gift-substitute, if you feel the need to spruce it up a bit before licking the envelope, perhaps you could accompany it with a poem or a prayer for the recipient.
Cardthartic (whose new website isn’t up yet, but from which you’ll soon be able to order cards) continues to share proceeds from Celia’s card with BDSRA. For Columbus locals and for people in our hometown of Gallipolis, the cards should be available at both The Book Loft and The Purple Turtle.
Please also remember that using Good Search to navigate the web and making purchases through Good Shop are easy ways to help. Just designate BDSRA as your charity of choice.
Our family is not the only one whose holidays, whose every days, are affected by Batten Disease. Thank you for considering the aforementioned ways to support efforts to develop treatments, for giving hope to the possibility of a cure.


Poppy John said...

Andy My Boy & Jenni Baby,
You two are so special! Great choices...you can bet your bippy that I'll pick one.
Sign at local church, "Life is not the way it's supposed to be...It's the way it is...The way we cope with it, is what makes the difference."


P.S. I sensed that something was wrong at our "Southside, W.V. Christmas Festival" when Santa got arrested...update to follow.

Unknown said...

I just "met" you when looking up this disease as a friend has a grandchild who has been told she has 24 more hrs due to it. She's a cute little girl.. and it's heartbreaking. I found you, and your precious little daughter with that grinning little son and I have fallen in love. I have a daughter with what is considered to be a rare disability but it's not rare beside what you are coping with. Hang in there. You have another friend whispering prayers for strength for all who are involved in this little girls life and heart. She's beautiful.

shashank said...

Here is a link to more information about the genetics of Juvenile Batten Disease that was prepared by our genetic counselor and which has links to some useful resource for those dealing with this condition: http://www.accessdna.com/condition/Juvenile_Batten_Disease/786. There is also a number listed for anyone who wants to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA