Year: 2016

November 2016

 

This is the time of year we surround ourselves with the love of family and friends and give thanks for our many blessings. At the Clinic for Special Children, we give thanks for you; your trust and support allow us to alleviate suffering and change lives.

 

We are inspired to share children’s stories, like that of Sara, a compassionate and vibrant teenager who first started to suffer from motor disability as an infant. Sara’s disease progressed rapidly, until she was finally confined to a wheelchair by the age of 6.  Thereafter, she suffered daily from severe dystonia, involuntary and forceful muscle contractions that impose painful contortions on the body and interfere with the smooth, intentional movements we otherwise take for granted.  Through the help of the Clinic, Sara was diagnosed with a rare genetic condition called tyrosine hydroxylase deficiency, more commonly known as Segawa Syndrome, which is caused by mutations of the TH gene. Our doctors used this crucial information to offer Sara a precise, safe, and life changing therapy in the form of L-DOPA, a chemical indispensible to normal motor function of the brain. Slowly her muscles loosened, she regained purposeful movement of her hands, her voice gained power and fluidity and she was able to stand on her own two feet. Now is able to function as a typical teenager, Sara texts, talks and snapchats with her friends. She is gaining strength daily and has set a goal of walking in May!

 

Segawa Syndrome is one of more than 220 genetic disorders we treat and diagnose at the Clinic, and for most of these conditions, we are able to reduce the burden of disease, prevent disability, or prolong life in ways that transform the lives of children and their loved ones. Our personalized approach to genomic medicine often illuminates understanding about complex diseases found throughout the world, and advances science and patient care one child at a time.

 

Working together, we can enrich the lives of children like Sara, and your support is vital to this mission! Last year more than 60% of our financial support was raised from charitable sources. Whether you donate your talent, buy a quilt from a benefit auction, send a generous holiday gift, or donate each month, we are grateful for you!

 

Warmly,

                            

Kevin Strauss, MD                                             Christine Stickler, JD

Medical Director                                                 Development Director

 

To make a gift online: Click Here

To mail a donation check, please mail to:

535 Bunker Hill Road

Strasburg, PA 17579

For additional information about gifting to the Clinic for Special Children, please contact our development director:

Christine Stickler: 717-687-9407

For the 5th year in a row, CSC joined over 400 nonprofits looking for support during Lancaster County’s Extraordinary Give. Just 24 hours produced over 138 individual gifts and raised over $35,000 for the Clinic this! Best of all, each gift is stretched by matching funds and bonus awards. One day of extra giving from our global community makes an extraordinary difference for the children and families we serve.

Our model continues to drive the medical innovations of tomorrow by focusing on one child at a time.

Our local friends joined us at the Citizen’s Bank Fountain Across from the Lancaster Central Market for a very special Whoopie Pie Toss. We would like to extend a special thank you to Bird-in-Hand Bakery for providing the pies.

Thank you once again for your unwavering support and for the privilege of caring for your special children.

We are grateful to be able to share our patients’ inspiring stories with you like the following narrative by Living in the Light’s Levi Gershkowitz. Conor is an energetic two year old with a larger than life personality, living with Maple Syrup Urine Disease (MSUD). His mother, Julia, walks the reader through their family’s most vulnerable, challenging moments along Conor’s healthcare journey and shares how she found purpose and peace amongst tribulation. “His condition draws us together,” Julia says. “There are multiple times when we have had to lay him on the altar and say ‘Okay God, he’s in your hands.’ And we trust that God really is doing what he needs to. We are blessed with Conor, and he is in God’s hands.” Find his full story below.

We are so excited that our genetic counselor, Karlla Brigatti, was featured in Code Talkers, Genome Magazine’s book written to honor genetics experts who profoundly impact healthcare while communicating with extraordinary compassion and care. A patient reflects, “Her dedication, support, and compassion are unparalleled in an age when medicine has become so corporate. She is always willing to take a phone call, answer an email, or make a connection – literally even from a Brazilian rainforest.” Click the link below for her full excerpt. Congratulations, Karlla!

We would like to extend a big ‘thank you’ to Dr. Katie Williams and Dr. Devyani Chowdhury for their F&M talk on Bringing Advanced Medical Technology to the Plain Community. Dr. Williams and Dr. Chowdhury shared their empowering stories detailing how two projects they have been working on for the last few years that started as small grassroots initiatives (Newborn Pulse-Ox Program and ApoB study) have turned into large scale internationally recognized studies, changing global health protocols in newborn screenings and the way technology is incorporated into rural medicine.

Both doctors took the time to share their empowering stories of their humble journeys into healthcare, Dr. Williams coming from a rural dairy farm in Wisconsin and Dr. Chowdhury from a remote area of India with no schools. Their message rang clear: No matter what your background, your challenges or unexpected changes in your life’s path, one passionate person working on creative projects of any size has the ability to change their community and the world.

Dr. Vincent Carson, our first staff pediatric neurologist, was featured in an inspiring interview by LNP and LancasterOnline.

As the number of patients under the Clinic’s care grows, it is important to ensure that our clinical staff grows in parallel. We are proud to announce that Dr. Vincent Carson joined CSC’s team in July 2016. Dr. Carson committed to becoming a member of CSC’s staff in the summer of 2015 during his last year of residency. We remain dedicated to providing the highest quality of clinical care for our patients. By attracting top medical professionals to CSC, we will continue to fulfill our mission for many years to come.

Dr. Carson is a pediatrician and child neurologist. As a neurologist he specializes in disorders of the brain, spinal cord, nerves, and muscles. Personally, he has a special interest in the genetics of brain disease. He earned a bachelor’s degree in Biochemistry and Molecular Biology from Penn State University in 2004 and a medical degree from Drexel University in 2011. Dr. Carson recently completed his pediatric and child neurology training at the Children’s Hospital of Pittsburgh. He has affiliations with the American Academy of Neurology and the Child Neurology Society.

Dr. Carson, his wife Jen, and their four children were excited to move back to their native Lancaster County, which brings them close to their extended family again. When he isn’t seeing patients or with his family, you may find Dr. Carson playing ice hockey on a local community team!
Dr. Carson is thrilled to offer his expertise and service to children with special needs.

Read Dr. Carson’s welcome feature by LancasterOnline and LNP below!

Dr. Katie Williams was interviewed recently for a feature in Gulf News Magazine out of Dubai, highlighting her expertise on Ellis-van Creveld syndrome (EVC), a rare genetic disorder that causes dwarfism. The Clinic for Special Children currently treats the largest number of EVC children in the world.

Thank you to Dr. Williams for the international impact she’s made in translational medicine for the children and providers who will benefit from her knowledge and advice. Click the link to the right for the full interview.