Saying It Social

Social Networking For a Cause: The Power of Online Communities

I’d like to use this blog post to step out of our social-networking-for-business mentality and talk a little bit about using social networking for special causes.

About two months ago, I was reading down my Facebook News Feed to see what my network was involved with that day and I saw that a friend of mine from high school had become a fan of a page called, “Miracle For Megan Foundation Inc.” As soon as I saw this I had to check out the page because aside from social networking, social media marketing, etc for business, my other major passion is fundraising, supporting, and raising awareness for special causes and charities – so I was curious as to what this foundation was all about.

When I got to the facebook page I saw a picture of the most beautiful baby girl. I clicked on the Info tab to find out about Megan’s story. There was a website URL so I went to the site where I learned all about little Megan (who, coincidentally, lives just a few miles from me).

Here is Megan’s Story:

“Megan was born on May 29, 2008. She was at a healthy weight of  6 pounds 15 ounces. Everything seemed great in the beginning. Megan is our third baby. The first few months all Megan would do is sleep. She would not even cry to eat.  By the time she was 5 months old and not reaching her milestones we knew that something  was not right with our precious Megan. At five months old she was diagnosed with Hypotonia and Global Developmental Delay. Since January 2009 she has been in therapy at Kennedy Krieger Institute once a week.  She has seen numerous doctors trying to find the cause of her hypotonia.

Megan has had a very extensive work up in the past. All of which came back normal. After 13 months of testing we finally had our answer.  Megan had a newly available SNP-array test done. That showed an interstitial deletion at 15q13.3. It is a loss of 86 SNP’s. She has a loss of genetic material on the long arm of chromosome 15. There is one gene in the deleted region, CHRNA7 which is known to be a cholinergic receptor.

With this microdeletion there are four symptoms: severe developmental delay, intellectual disability, epilepsy, and neuropsychiatric problems. Megan has three of these symptoms as of now. Developmental delay, Seizures, and Hypotonia (extremely low muscle tone). We are unaware as of now if she will develop neuropsychiatric problems.  This microdeletion is not life threatening in any way. It will just take a lot of time and love to make her be the best she can be.

At 19 months of age she is only able to sit for a short amount of time. Eating has become a real challenge. Everyday brings a new surprise. Megan is such a joy to our lives and we are very lucky to have her.”

Megan’s mom and dad started the Miracle for Megan Foundation to raise awareness, increase research, and develop optimal treatment methods for people with Genetic Disorders. They envision the ability to detect Genetic Disorders early and help to provide exceptional care to the patients and families with these disorders.

After reading all about Megan and seeing lots of pictures of her on her facebook page (see them here) she immediately touched my heart.

I learned that Megan’s family was trying to put together a 5k to raise money for their cause, so I introduced myself to them and offered anything I could do to help. The 5k is being planned for October at Padonia Park Club in Cockeysville, MD but in order to put on the event the family is needing corporate sponsors just to offset expenses before they can begin raising money for this truly important cause.

They have come up with an excellent tiered incentive program for corporate sponsors, there are sponsorship opportunities ranging from $100 to $3000, please take a peek at their sponsorship packet to see how your company could benefit from becoming a sponsor:

Here is their flier:

I invite you to join Saying It Social and become a sponsor to help Megan and her family with their wonderful cause.

Thank you so much for taking your time to learn about Megan. Please also use the “share” button to let your networks know how they can help.

Miracle for Megan Foundation Facebook Page: http://www.facebook.com/#!/pages/Miracle-For-Megan-Foundation-Inc/224129773527

Miracle for Megan website: http://www.miracle-for-megan.com/

April 12, 2010 - Posted by AK Stout | Uncategorized | 5k baltimore, 5k maryland, gene deletion, kennedy krieger, microdeletion, miracle for megan