Dearest Eastside Eagles,
It already seems like a dream that we were in Greenville celebrating Spirit Week with all of you, in large part because you all seem to good to be true. You are an exceptional group of human beings devoted to doing exceptional things. You understand, fully and completely, that a person is not known for how others treat them, but for how they treat others.

We are so blessed and humbled to have been chosen as the recipient of Spirt Week and we will never be able to thank you enough. Indeed, the words thank you seem insufficient to express the depths of our gratitude, but we will say them anyway— THANK YOU, EASTSIDE. FROM THE BOTTOM OF OUR HEARTS, THANK YOU.

We are still reeling from the amount of money you all raised. I’m smiling ear to ear as I type this and think of that extraordinary sum. This contribution will significantly alter the impact our research can have—at a time when we really needed it. As a baby foundation, we were about to hit our third year slump. A common occurrence; after donors have given two years in a row, they are less likely to give for a third year. But the money you raised has put us at a whole new level, a level that will allow us to continue funding the incredible researchers that have already made such strides in the last two years.

But it was so much more than the money. You not only touched our hearts, you healed them. Nowhere else in the world are our kids treated like rock stars. Nowhere else in the world would a lovely girl ask our kids to the school dance or pay money for a chance to have frozen yogurt with them. Nowhere else in the world would students sing songs to our kids on command or line up to have their photos taken with them. That experience, seeing my son, and all the Pitt Hopkins children being treated with such love, such kindness, gives all of us parents so much hope for a brighter, better future.

I think I speak for all the PTHS families when I say that you all have brought us a sense of peace — a peace we could not have found without you. Of course, as special needs parents, there will be days that are tough, but when they come, we need only remember your faces, your smiles, your hearts, to pull us out of the slump. We need only remember that there is true goodness in this world–the goodness you all showed us.

We hope that you all will do the same. When you are hit with heartache or pain, we want you to remember that you — ALL OF YOU– have the power to create joy, to heal hearts, to change the future. That is a power we all have, but many don’t realize it. You, as students of Eastside should know, as it is the essence of who you are, the very fiber of your community. It is, at it’s core, the very notion of “Strength through Human Understanding.”

Our only regret is that we did not get to spend more time with each and every one of you. But ALL OF YOU you make up the spirit that is Eastside. Parents, teachers, students, you are all in our hearts. I imagine if there had been a Spirit Week at my high school, I would have faded into the background…I was shy and not very confident at that age. So, to you kids who feel like you fade into the background, I want you to know, we saw you, and more importantly, we felt you. Even if you weren’t able to attend the events for financial or other reasons, you were seen, you were heard, you were felt. Because Spirit Week is about is coming together to raise our voices on behalf of those who have no voice.

My wish for you all is that you retain this incredible ability to help those less fortunate, whether it’s a kid with Pitt Hopkins, the child with no money for lunch, or the student being bullied for whatever unworthy reason. If you do, you will continue to change the world for the better.

YOU ARE EAGLES—and you are angels. You carry this power within. Don’t ever forget it.

THANK YOU EASTSIDE. Thank you for all you have done for us. It is a debt we will never be able to repay. But If there is ever anything we can ever do to try, please don’t hesitate to let us know.
On behalf of the board of the Pitt Hopkins Research Foundation and all the families worldwide with Pitt Hopkins children, THANK YOU.

All our love and gratitude,
Audrey Davidow
President, Pitt Hopkins Research Foundation

September was such a huge month for our Pitt Hopkins family.  On Sept 18, we celebrated our 2nd Annual Pitt Hopkins Awareness Day (AD).  Our small but mighty group came together to celebrate our Pitt Hopkins community and raise awareness.

This second awareness day was even more successful than the first!  It was amazing to see families spreading the word – from Ireland, Canada, UK, New Zealand to USA to Italy (and many more countries), family raised awareness in many different ways.  During the month and days leading up to awareness day, families chose many ways to be involved.

Over 7 families contacted their legislature and local governments to have Sept 18 declared Pitt Hopkins Awareness Day.  Several shared their stories being featured in newspapers or blogs.  Some families thanked those that have had a profound impact on their child.  There were over 1000 t-shirts ordered across the globe.  Many other families printed their own shirts.  Families shared their PTHS AD t-shirts with their schools, therapists, families and friends who wore them proudly.  Some brave siblings spoke to their schools about their brother or sister with PTHS.  Other families wanted to raise money for research and held “Share a Smile” campaigns at their schools, sold wrist bands, planned walks, comedy night or manned a lemonade stand.  With over 125 beautiful faces on our collage, many people posted the wonderful collages and beautiful profile pictures on Facebook to raise awareness with their friends and families.  And many chose to share one or both of our inspiring awareness videos.  Over 100 families chose to participate in a PTHS Thunderclap or the clap hear round the world on social media.  Others chose to share the 100 More Diagnosed campaign through social media.

In whatever ways you chose to celebrate PTHS Awareness Day – thank you for continuing to raise awareness of Pitt Hopkins Syndrome and our inspiring children.

The first ever Stand-Up for Pitt Hopkins comedy event was held September 9, 2014 at the Funny Bone Comedy Club in West Des Moines, Iowa. The event was a huge success, raising $9,500 to be donated to the Pitt Hopkins Research Foundation!

We enjoyed a wonderful evening full of laughs with our family and friends! A huge thank you to comedian/magician Ben Ulin and comedian Willie Farrell for donating their time to make this event so successful. Also, thank you to all of the sponsors who donated so many great items for the silent auction that accompanied the show, including the Funny Bone Comedy club in Des Moines for allowing us to use their facilities!

It was a great night spent with great people for a great cause- Thank you!

 

 

 

Inspired by Ian’s 2nd Annual Walk for Pitt Hopkins held on Saturday, September 6th held was a success! We enjoyed a wonderful day of fun with great people supporting Ian and Pitt Hopkins Research. We enjoyed the day spent with two other Pitt Hopkins families that joined us for the event- Nolen’s family (the Parkin’s from Urbandale, Iowa) and Eli’s family (the Adamson’s from Baldwin City, Kansas)! We feel so blessed to have been able to raise $9,500 for to be donated to the Pitt Hopkins Research Foundation.  A day full of inspiration and hope in Bedford, Iowa!