Friday, May 27, 2011

The Downs Heart Group Needs Your Help

Yesterday I received the following message from Penny Green, Founder and Director of the UK's Downs Heart Group.  I'll write more in a moment about what this group really means for parents of children with Down syndrome and congenital heart defects, but please read this first:

Hi everyone,

Please forgive this intrusion, but Down's Heart Group desperately needs *YOUR HELP*. The current economic climate means that currently our funds are very much depleted and there is a risk that if we can't pull together some fund-raising plans in time before they run out, Down's Heart Group may close before the end of the year.  Those of you that know my story or that have known me a while will know that is something I will fight to prevent, but I *CAN'T* do it *ALONE*! So I am asking *EACH*and *EVERY ONE* and of *YOU* to do what you can to help. If you value the work that we do - our website, newsletters, helpline, information, this list, Facebook group and posts etc. please *HELP US* to let them continue so that others can benefit in the future.

There are lots of ways you can help, wherever you are in the world and they don't all cost you money:

* If you can make a donation (no matter how small) there are ways to do that shown here how to donate

* In the UK you can use any of the links found at the website above to support us when you shop online (some even give you money back) shop online

* Hold a fund-raiser for us - you can use those same sites in various ways to collect sponsorship or donations online fundraising - it doesn't have to be anything big.

* Ebay - PLEASE visit eBay for Charity and click on the dark blue ribbon to select Down's Heart Group as a favourite charity

*Currently we are entered into a competition where if we get enough votes we stand to win a £100 grant from eBay* Once you have DHG selected as a favourite charity, when you sell on eBay , you can choose to donate a % of your sale to us, or when you buy you can add a small donation by rounding up your payment.

* ASK friends and family to do something too, share this email - whatever you can think of.

Whatever You can do to HELP US, will really be appreciated! *THANK YOU*

Penny Green
Director, Down's Heart Group

Tel :0844 288 4800
Fax : 0844 288 4808
Skype: dhg


(Okay, it's back to me now)...Hopefully you or someone you know can help.  This group was a tremendous source of support and information when Samantha was born and we found ourselves facing the daunting and terrifying world of heart defects and open heart surgery.  Through the listserve alone, I was able to do some one-stop-shopping, if you will, to find others who had gone through the same thing who could offer some really invaluable advice.  The website's main function is to provide non-medical people in the UK and in other countries good information about the heart conditions so common in people with Ds, in the form of publications written with the layperson in mind.  I know that there are other resources out there, and the rise of Facebook has been a big one.  But to a new mother of a child with a diagnosis of Ds, I was overwhelmed and excited to find a tailor-made group to answer my questions.

Additionally, Penny, who many of you may know already from Facebook, has worked tirelessly to raise awareness for this, and for all causes relating to Ds.  She has spearheaded trips to Nigeria to help provide information and resources to the families of children with Down syndrome there, supporting their DSA. 
This woman does good work

And the group is in trouble, and facing extinction. 

Please share this, and pass this message along.  Visit the website, read their newsletters, click on their resource links.  Don't let the Downs Heart Group disappear!  E-mail Penny directly with any questions about the organization, the financial crisis, whatever

Thank you!

1 comment:

Lacey said...

Wow, what a great group, I hope they are able to raise the funds they need.
Oh, and my boys would totally dote on Sam, especially my Carter. He would play barbies or anything with her!