Nothnagle Realtors raise $12,000 for research in honor of Ella Schilling

 

A friend of mine from high school along with Nothnagle Realtors hosted a fundraiser for PTHS research in Ella’s honor Monday night.  It was a truly overwhelming night for our family as the group raised $12,000 for PTHS research.  Of the over 100 guests that attended we only a knew a select few of them.  Through my friend sharing Ella’s story, stories of the other children and ALL of the work that is being done by some SUPER AWESOME people in our group we managed to make an impact on a lot of people.  So much so that people that didn’t even know us were interested in Ella and Pitt Hopkins Syndrome.  Nothnagle Realtors (http://www.nothnagle.com/) were an amazing generous and caring group of people.  Our family is smiling from ear to ear today. 

 

Here is a message below that was sent from the Company’s President, Armand D’Alfonso regarding the fundraiser.   

Thank you to everyone for your support at Ella’s fundraiser Monday evening. Together, we were able to raise $12,000 for Pitt Hopkins Syndrome Research.  I’m so proud of what we accomplished to help researchers someday find a cure for Ella and other children that have this very rare genetic disorder. 

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Dr. Sweatt and UAB Sweatt Lab receives $1.8 million NIMH grant

July 7, 2014 — Dr. J. David Sweatt, Professor and Chairman of the Department of Neurobiology at the University of Alabama at Birmingham, has received a research grant from the US National Institute of Mental Health (NIMH) to fund a new project to investigate the molecular and neural basis of Pitt-Hopkins Syndrome (PTHS). The grant, which starts July 15, 2014, totals $1,837,500 over 5 years. Dr. Sweatt exclaimed “I want to thank all of the PTHS families who helped with fundraising for the lab over the last several years. Obtaining this new NIMH research grant was only possible because of the help and financial support of the PTHS families and the PTHS Foundation, which provided the seed funds necessary to allow us to submit a very strong proposal based on the pilot data we generated over the last two years.” Sweatt added “ To my knowledge this is the first PTHS research grant to be funded by the US National Institutes of Health, so this is a very exciting development for the PTHS community.”

The newly funded research in the Sweatt laboratory will capitalize on the recent discovery that PTHS is a neurodevelopmental disorder, the underlying genetic basis of which is mutation/deletion of the TCF4 gene. In their study investigators in the Sweatt lab will undertake comprehensive behavioral testing of genetically engineered PTHS model mice (TCF4 heterozygous deficiency mice) focusing on learning and memory, and investigating whether there is altered function in the neurons of PTHS model mice. In addition the Sweatt lab will test whether a specific category of drugs, histone deacetylase (HDAC) inhibitors, might ameliorate any behavioral and neurophysiologic deficits observed in the mice. Scientists in the Sweatt lab who will be working on the project include Dr. Andrew Kennedy, Dr. Elizabeth Rahn, Dr. Cristin Gavin, and Research Technician Mr. John Lewis. The proposed studies will yield valuable information concerning the Intellectual Disabilities aspect of PTHS, and whether HDAC inhibitors might be a candidate treatment for this aspect of PTHS.

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Michigan: Olivia’s 5K & PTHS Playland raises $6,700

Olivia’s 5k and PTHS Playland was held June 21, 2014 in Lincoln Park, Michigan. This wonderful event raised approximately $6,700.  It was a beautiful day filled with great support and love.

This was the 5th year of raising awareness of PTHS in Michigan. Some exciting new details were added to this year’s event:  a kid fun run, sponge challenge, and plunger races,…just to name a few! Lunch and all activities were part of the ticket cost and the lovely DJ Mandy keep everyone rocking throughout the day. In addition to the activity portion of the day, this year shopping from various vendors was offered, face painting, and palm/tarot card readings. A portion of funds from shopping benefited the PTHS research fund as well.

 

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Race for Rylie raises $11,570 for PHRF in PA

On June 21, 2014 the Maginn family held their 5th annual Race for Rylie event, to benefit the Pitt Hopkins Research Foundation.  The Race was held at Nockamixon State Park- Marina bike trail, Quakertown, Pennsylvania. Five Pitt Hopkins families joined together that day!  A total of $11,570 was raised for research to find a treatment for PTHS.

Our mission is to increase awareness and research in the understanding of Pitt Hopkins Syndrome. Race for Rylie is an important annual fundraiser for the Pitt Hopkins Research Foundation. In 2013, we funded $330,000 of research for Pitt Hopkins Syndrome. We were able to raise more money this year for research with our new Pledge Participants option. 

 

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