This week’s charity spotlight is on Girl Power 2 Cure,  a non-profit that endeavors to support Rett Syndrome research. Ingrid Harding, Founder and President, took some time to talk with CommuniCause about her charity and the strides they have made to advocate the search for a cure for Rett Syndrome. We hope that reaching #4 in our top ten just in time for the 4th of July weekend will be lucky!

Read below to learn about their achievements and what Ingrid has learned in her quest to get the word out for Girl Power 2 Cure.

Please tell us about your charity as well as yourself and your involvement or role.

Girl Power 2 Cure, Inc. is dedicated to raising awareness and funds for treatments and a cure for Rett Syndrome, a devastating neurological disorder that primarily affects girls. Four years ago, when my daughter was 4 years old, we finally got a diagnosis for why she was not able to walk, talk or use her hands; why she was unable to sleep at night, and why she spent most of her days screaming in pain.

Every 90 minutes, another girl is struck down for life. Many girls were able to walk and talk until age 2 or 3, only to have the disorder take everything away almost overnight. Most of the girls also suffer from uncontrollable seizures. It is possibly the worst neurological disorder out there because it affects every part of the body, giving symptoms from every neurological disorder for an entire lifetime.

The bright, beautiful eyes of these girls tell a different story. One of extreme courage and will to live, learn and love. From within their trapped bodies, they communicate through their eyes, through a variety of noises, including the occasional amazing giggle.  They are in there. They are waiting for us to come and get them.

I started Girl Power 2 Cure, Inc. after watching the amazing bonds form between my daughter and the other little girls in her regular ed Kindergarten classroom. I felt their Girl Power and so did Sarah.  I knew it would be these little girls all over the world who would one day come together and put a stop to Rett Syndrome through their efforts.

There are women in their 50s who have been battling this since before I was born. Since my daughter was born in 2001, there have been over 60,000 more girls born with Rett Syndrome. And by the time I finish writing this and see it posted, another 20 or more.

Luckily, it is not just wishful thinking of moms and dads around the world that we can save our daughters. In 2007, research proved that Rett Syndrome is reversible. Now to raise the awareness and funds to get the job done. 

We are ready to harness the spirit of girls in support of their fellow girlfriends who are suffering from Rett Syndrome. We are ready to have you join us in our fight to make Rett Syndrome the first curable neurological disorder.

What experience do you have in Social Media and how have you used it to forward the goals of your organization?

For my personal connections, I started using Facebook, Twitter, and Blogspot, and then started pages for our organization as well.  We use these sites to communicate mostly to other Rett families – not only news about our organization, but ideas and tips to help their girls, plus a place to come for support.

Our annual fund raiser, Dress Up 2 Cure, held every April is also built around online social networking, although not through any packaged program. We offer each family who heads up a team their own page on our site and give them sample emails to send to family and friends to get them involved with their team. We then create subpages linked to their page for each team member. Donors get their names listed on the page as well. It is a great place for families with Rett Syndrome to share their personal story – and for their friends and family to share their involvement as well.

We have had interest from young girls who want to set up their own pages to participate in the event…without even knowing a girl with Rett! That is the goal of our organization: to use the internet to engage girls 6 and older to fight for a cause that is disabling their fellow girlfriends….using that Girl Power to find the cure.

What aspect of Social Media are you most interested in learning more about to benefit your organization?

How to engage in Social Media that not only reaches out to existing families and supporters, but jumps out beyond those circles to engage in mainstream awareness and support.

What tactics have you used to promote your organization for CommuniCause, and which have you found to be most effective? Do you have any additional plans that you are willing to share?

Just good “old-fashioned” (ha!) emailing and posting to Facebook and Twitter! With all of the families affected by Rett plus all of their contacts, we prove to be a mighty bunch! Our plans for the next few weeks just involve lots and lots of communication, mostly through online resources.

What advice could you share that you think would benefit other similar organizations regarding tactics to promote your organization for CommuniCause, both on and offline?

Just keep true to your passion and your story. And do not get lost in just getting votes. This competition is bigger than that. It is about being a part of an online movement to engage the world in all that is good.  Getting your story out there and having your supporters feel connected to your success is priceless – even if that success is just rising from #200 to #50, think about how amazing that is!

What has been the most valuable take-away from your involvement with CommuniCause so far?

“If you build it, they will come”…. As I work into the wee hours of every night to help my daughter and hundreds of thousands of other girls, I can get overwhelmed and buried.  Participating in this competition has shown me how much we have built and that people are there for us – they are coming to help. 

What do you feel is the most exciting part about CommuniCause?

Feeling like we have really taken our cause “public” and finding out that our vision for our organization and its role in finding a cure for Rett Syndrome is realistic. I can’t tell you how excited I am to feel our vision taking shape!

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I’m so happy to be able to spotlight Ingrid for her cause, and hope that you have been able to learn a little bit from this feature. She is so very passionate in her quest to end this horrible affliction that I know if anyone can serve as the catalyst to see it happen - it would be her! Please join me in wishing her the best of luck for CommuniCause and all of her efforts.

Learn more about Girl Power 2 Cure on their official Website, and don’t forget to follow their quest on Twitter!

We still have a few weeks left, so please feel free to reach out and share your story with me. I truly wish that I was able to spend the time and feature each and every one of your organizations. It is wonderful to be able to see all of the good that each of you accomplish and foster daily.

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Twitter:
 @At1MP
Phone: 407.756.1377

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