Fletcher Family: Inspired by Ian’s 2nd Annual Walk raises $9500 for research!

 

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!

 

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Adamson family: Confections for Compassion fundraiser

Hosted by Eli Adamson’s family
July 26, 2014
Baldwin City, Kansas.

Our event was a success. We had 35-40 guests. My friends, Lesley and Jessica, 2 other Pitt Hopkins moms, did an awesome job of sharing with the group about how things got started (in 2008 with only 4 families diagnosed). They shared about how the research foundation started in 2012 and that in only 3 years our group of less than 400 families has raised $900,000!!!! AND that of the 6 research teams studying PTHS, one team has been awarded a $1.8M grant from the NIMH…all because we funded their small research projects. It gives great validity to the research. All accomplished through bake sales, t-shirt sales, 5Ks, auctions and events like the one we held which will hopefully be duplicated by other PTHS families. The PTHS families are an amazing group of people, with a ‘can do it, will do it, doing it, did it, doing it again’ spirit.

Our event has raised $1700 so far with more donations coming in!!!

I am so blessed to have such fantastic friends, family and community who are willing to lock arms with my family in a fight for a better future for Eli and the other Pitt Hopkins children.

 

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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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Lenzen family: raises $11,062 in “Kids Bike for Henry” event, Colorado

 

I want to sincerely thank all of our amazing sponsors and volunteers for helping with our event in Colorado, a children’s bike/trike ride at the central park in our community The Farm at Arapahoe County. In attendance were approximately 50 kids who treated Henry like a rockstar. In addition to the ride in the park, we had a bouncy house (donated by Elizabeth Lowey of 8z Real Estate), a face painter (RE/MAX realtors Brandon Rossell and his wife, Svetlana), a bike decoration station, snacks (courtesy of our volunteers) and 36 dozen Dunkin’ Donuts (kind donation of Dunkin’ Donuts on Smokey Hill Rd.). Although the ride was very important to us as we raised awareness in our community, we were very focused on online fundraising prior to the event. In total, we raised $11,062 with the majority of this amount donated directly to the University of Pennsylvania’s Million Dollar Bike Ride to End Rare Disease, an amount the University of Pennsylvania doubled up to $50,000. Our event would not have been possible without the support of our volunteers, Brooke Norrell, my parents, Don and Vicki Norrell, Erika Kaye, Shawn Melnick, Annik Stahl, and Pamela Smith; our over 100 donors for their generous contributions; our friends who were able to come and participate in the ride; and our sponsors. We are truly grateful for a successful event, great turnout and fun day.​

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Pedal for Pitt Hopkins: Million Dollar Bike Ride, Philly

Pedal for Pitt Hopkins

Million Dollar Bike Ride to End Rare Diseases

Philadelphia, Pennsylvania

 

A HUGE THANK YOU to everyone who donated, fundraised, and supported us in raising money for the Million Dollar Bike Ride — WE HAVE SURPASSED OUR GOAL OF $50,000–we have raised $60,000! UPenn has matched up to $50,000, Which means $110,000 total for research!! We couldn’t have done it without all of you, so THANK YOU!

We may be small…but we are powerful.
From California to Carolina, the Netherlands to Canada, our rare disease team has rallied across the globe selling everything from jewelry and t-shirts, donuts and candles to raise money for this incredible opportunity. With less than 400 diagnosed, we are one of the rarest groups to join the ride. However, our commitment is unwavering. Despite our numbers we have led fundraising with $60,000!! We believe a group of thoughtful, committed, citizens can change the world. And we are proving it. Everyday.

Please visit our site for more information: http://givingpages.upenn.edu/pedalforpitthopkins

The Pitt Hopkins Research Foundation is honored to have been chosen as one of 15 rare disease organizations to participate in the Penn Medicine Center for Orphan Disease Research and Therapy (CODRT), Million Dollar Bike Ride.  Every dollar raised or donated will be matched by CODRT, up to $50,000.

 

 

Pedal for Pitt Hopkins PDF Flyer

 

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Liz: Sweet 16 pedals for PTHS in Philly!

The Burlington Times News
by Chelsy Stark
May 1, 2014

Liz Jennings was diagnosed with Pitt Hopkins syndrome three years ago. Ever since, she’s been defying what medical journals say she can and cannot do.

Pitt Hopkins Syndrome is a rare disease; fewer than 300 people have been diagnosed with it in the world. It’s a severe neuro-developmental disorder characterized by developmental delays, problems with motor coordination and balance, breathing abnormalities, seizures and intellectual disability.

Despite these challenges, Liz, of Burlington, will be riding her adapted tricycle for the 11 miles of the Million Dollar Bike Ride while her mother, Judy Jennings, runs behind her. The event is Saturday in Philadelphia, and will raise funds for rare disease research.

Liz grew up around bikes. Judy Jennings started working at the Elon Bike Shop on Webb Avenue in Liz’s early years, carrying her around in a Baby Bjorn after school or in the summers.

“We would go on bike rides carrying her in a little trailer,” Jennings said. “Once she was old enough to ride a bike, she really took to it and has always seemed to like it.”

Now a freshman at Williams High School, Liz hasn’t stopped pedaling.

The duo has trained for the 11 miles persistently even through hard times. Not long after completing a 5K race together, Liz got H1N1, which set her back substantially. After three weeks of recovery, bad weather hit.

“We’ve been training at the YMCA on a stationary bike,” Judy Jennings said. “She also has a stationary bike in her bedroom that we can adjust the resistance on; she’ll ride for about an hour on those.”

Neither of them is worried about completing the race, especially with Liz’s special motivation: her music.

“She has songs that she has picked out, and we are going to play music the whole time,” Jennings said. “If she’s listening to music, she’ll just keep pedaling.”

The Million Dollar Bike Ride is an event to raise research funds for the Center for Orphan Disease Research and Therapy at the University of Pennsylvania, which will then match the money raised by Team Pitt Hopkins and award a research grant.

Liz’s personal fundraising page for the event has surpassed her goal of $5,000 to go to the research. The team as a whole has raised more than $50,000, meaning more than $100,000 will be going to research for the treatment and possible cure of Pitt Hopkins.

“I’d also love to see them do some kind of research with exercise and how that can help improve the quality of life for folks with Pitt Hopkins,” Jennings said. “I think [an active lifestyle] has made a huge difference for Elizabeth.”

The age cutoff for the race is 16. Luckily, Liz’s 16th birthday is on the day of the race. It will be a very sweet 16 indeed.

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Pauca Family: Raises $15,025 in Race for Victor, April 12, 2014, NC

 

Pauca family finds positives in fight against rare disease

There will be a 5-kilometer road race Saturday at Tanglewood Park to benefit a charity unlike any other in the nation.
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