Hope Realized | Kirklyn’s story

The Sensenig family shared their story of never losing hope and the lifesaving treatment their son, Kirklyn, received at the Clinic for Special Children for our Annual Giving Appeal.

You can read their story below, a letter from our board chair, and give to the Clinic to help support those with rare genetic disorders, like Kirklyn.


The Sensenig Family’s Story

Read the full letter: Click Here

A Letter from our board chair, Herman Bontrager

Read the full letter: Click Here

How Can You Give?

Make a donation online with a credit card: Give Here

Mail your gift with cash or check (made to Clinic for Special Children) to:

Clinic for Special Children
PO Box 128
Strasburg, PA 17579

Over $70,000 raised during 2023 ExtraGive!

On Friday, November 17, 2023, 293 Extraordinary people donated to the Clinic for Special Children and raised over $70,000 for children and adults with rare genetic disorders in just 24 hours during the Extraordinary Give!

We couldn’t do our work without the support of many people, like those who gave during this annual online giving marathon.

This year, in total, the ExtraGive raised $8.9 million was raised for over 453 local non-profit organizations.

Thank you for your support!

2023 ExtraGive | Support the Clinic on Friday, November 17th!

You can help make an EXTRAORDINARY difference!

It’s almost that time of year again! The Extraordinary Give – Lancaster County’s largest day of online giving – is on Friday, November 17th!

Help the Clinic raise $75,000 in 24 hours for our mission. You don’t need to be located in Lancaster County – we have donors from all over the United States who support the Clinic through the ExtraGive.

Every dollar you donate on November 17th during the ExtraGive will be stretched by a pool of more than $500,000 from local sponsors.

Donating is simple – here are three ways you can support:

  1. On Friday, November 17th (from midnight to 11:59 p.m.) visit www.ExtraGive.org and select ‘Clinic for Special Children’ to give online during the 24-hour period.
  2. Call the Clinic at 717-687-9407 between 9:00 a.m. – 5:00 p.m. on Friday, November 17th to donate via credit card over the phone. Won’t have access to internet on the day of ExtraGive? Call us before and we’ll help process your ExtraGive donation for you on the day of ExtraGive.
  3. Set up your own fundraising page! You can create your own personal fundraising page to share with your friends and family to raise money for the Clinic! Visit www.ExtraGive.org, search for ‘Clinic for Special Children’, and click the ‘Fundraise’ button to create your own page before November 17th!

For additional information, please contact the Clinic’s Development team at 717-687-9407 or giving@clinicforspecialchildren.org.

Enjoy our Fall 2023 newsletter!

Our Fall 2023 newsletter is out now!

This edition of the Clinic’s newsletter focuses on our Plain Insight Panel™ (PIP) test and how it’s used to inform and influence patient care. Read a family’s story about how the PIP helped them prepare for their baby, learn about how the PIP has been used since its launch over three years ago, and read about how we collaborate with another local nonprofit that conducts research in the Amish community.

CLICK HERE to read the latest issue now!

2023 CSC 5k | Over $47,000 raised!

Thank you to over 370 runners, joggers, and walkers who joined us on Saturday, September 16, 2023, for our 6th annual Clinic for Special Children 5k. Over $47,000 was raised in support of the Clinic’s mission!

We couldn’t do this work without the support of many like the event sponsors, volunteers, participants, staff, and more! THANK YOU!

Stay tuned for details about our 2024 race.

International Study of TNNT1 Myopathy Establishes Operational Framework for Future Clinical Trials

STRASBURG, PA – A new study summarizes WiTNNess – a hybrid prospective/cross-sectional observational study of TNNT1 myopathy, a rare and lethal neuromuscular disease that causes progressive muscle weakness and stiffness, while cognitive and social development remain normal. The study aimed to identify clinically meaningful endpoints for future therapeutic trials following recent guidelines on natural history studies to support clinical trial readiness. The study was a broad collaborative effort led by clinicians and researchers at the Clinic for Special Children that included participants from around the globe and appears in the current issue of Annals of Clinical and Translational Neurology.

Read the full press release HERE

Read the paper HERE

Register today! | Clinic for Special Children 5k

REGISTER TODAY!

Join us for the 6th annual Clinic for Special Children 5k on Saturday, September 16th from 9:00 a.m. – 11:00 a.m presented by Nemours Children’s Health.

Runners, joggers, and walkers are invited to participate in the Clinic for Special Children 5k – a 3.1-mile course along scenic country roads, winding through Lancaster County farmland, venturing past a vineyard, an Amish schoolhouse, and acres of picturesque farms. Strollers and wheelchairs are welcome!

Click on the links below to register online or via a paper application.

 

 

 

WHERE The manually-timed course starts and ends at the Clinic for Special Children, 535 Bunker Hill Road, Strasburg, PA 17579.

TIMES 9:00 a.m. start for 5k race. Kid’s color fun run following the main 5k race. Race day registration for the 5k race & kid’s color fun run will open at 7:45 a.m. and close promptly at 8:45 a.m.

PACKET PICK-UP Friday, September 15 between 9 a.m. – 5 p.m. and race day from 7:45 a.m. – 8:45 a.m. at the Clinic for Special Children.

5K ENTRY FEES
$30 by August 21, includes t-shirt (entry & payment must be received by Aug. 21).
$35 after August 21 (including race day) t-shirt while supplies last.
$10 Kid’s color fun run for ages 10 & under. Kid’s color fun run to start after conclusion of main 5k race.

HOW TO REGISTER
1. You can register online HERE at Pretzel City Sports. Online registration has a nominal service fee and closes at midnight Weds. 9/13.
2. Mail registration form & payment toClinic for Special Children, Attn: 5k Registration, PO Box 128, Strasburg, PA 17579. If paying via check, make payable to: Clinic for Special Children
3. Register in-person on race day. Race day registration will be open at 7:45 a.m. and close promptly at 8:45 a.m.

5k AWARDS Medals will be awarded to the 1st overall male and female finishers. Awards will be given to the top three male and female finishers in the following categories: 14 & under, 15-19, 20-29, 30-39, 40-49, 50-59, 60-69, 70+.

QUESTIONS Contact us at queries@clinicforspecialchildren.org or call 717-687-9407.

Event will be held rain or shine. No refunds, mailed awards or t-shirts. Results posted on PretzelCitySports.com & photos posted Mon., Sept. 18 on ClinicforSpecialChildren.org. Events are subject to change due to severe weather conditions, restrictions, or unforeseen circumstances.

Thank you to our sponsors!

Presenting Sponsor


Kid’s Fun Run Sponsors

Platinum Sponsors

Gold Sponsors

Dienner Home Improvements

Eberly Plumbing

 

Silver Sponsors

 

 

 

 

 

Enjoy our Summer 2023 Newsletter!

Our Summer 2023 newsletter is out now!

This edition of the Clinic’s newsletter focuses on rare genetic disorders that cause immune deficiencies in the community. Read a family’s story, learn about our new Be a Child’s Cure: Plain Marrow Donor Registry, read about how collaborating research teams are searching for cures, and see updates on our new building project.

CLICK HERE to read the latest issue now!

Enjoy our 2023 Spring Newsletter!

The special edition of our Spring 2023 newsletter is here!

Our Keeping the Promise: Building Hope capital campaign to raise funds for our new building project is the focus of this special edition. Read the issue to learn more about the design of the new building, what we’re looking forward to the in future, and how the new building will allow us to care for families facing rare genetic disease for generations to come.

CLICK HERE to read the latest issue now!

Announcing the Clinic’s New Building Project!

We have exciting news to share about a transformational project! We have officially launched the Keeping the Promise: Building Hope capital campaign to build a new facility for the Clinic.

For more than 34 years, the Clinic for Special Children has provided services at our current facility in Strasburg, PA. Today, the Clinic treats more than 1,500 active patients and conducts world-class research, while charging minimal fees for these services thanks to the generosity of the community.

 

However, as each year passes, the operations at our Strasburg location become more challenging. By growing to meet the needs of the community, we’ve outgrown our space. The Clinic is surrounded by preserved farm land so we cannot expand the current facility. On a normal day, the waiting room is full, exam rooms are at capacity, and the parking lot overflows.

In order to solve this problem and provide ongoing essential medical services to the community, the Clinic purchased a 10-acre property in Lancaster County near Intercourse, PA, to build a new building. Excavation at the site began in November 2022. Building construction started in March 2023 and will run through Spring 2024.

The new Clinic facility will include more exam rooms, conference rooms for educational events, waiting areas designed for families, and dedicated space for specialists like cardiology, ophthalmology, and audiology doctors.

We’re excited to finally share the news of this monumental project with you. Now, we need your help to get us across the finish line and reach our $12.5 million goal.

You can learn more about our current fundraising total and the project’s details on our “New Building” webpage by clicking the red button below. 

We look forward to keeping you updated on our progress as we move closer to opening the new Clinic – a place of comfort, friendship, and hope for generations to come.

Downloadable 2023 CSC Events Calendar

This year is packed with fundraising events to support the Clinic! From auctions to a 5k race, there’s plenty of fun to be had at our upcoming 2023 CSC events! All events benefit the Clinic’s mission of providing accessible, affordable, and compassionate care to children and adults with rare genetic disorders.

Click HERE or on the image below to download our 2023 events calendar!

2022 Annual Report Available

The Clinic’s 2022 Annual Report is now available!

This year’s report features our work with seizure disorders, an interview with our community liaison, our financial performance in 2022, how the benefit auctions support our work, and a new building campaign for the Clinic.

You can read the report in full HERE.

Thank you to everyone that supported our work in 2022!

CSC receives grant from Jeffrey Modell Foundation as part of RAG1 international research team

In commemoration of Rare Disease Day on February 28th, we are excited to share that our international research team is the recipient of the prestigious global Jeffrey Modell Foundation Translational Research Program Award (Cycle 10). The study entitled, “From clinical and molecular characterization to CRISPR genome-editing therapy of RAG1 combined immunodeficiency”,  is a close collaboration between the teams of Dr. Ayal Hendel at Bar-Ilan University and Dr. Raz Somech at Edmond and Lily Safra Children’s Hospital in Israel, and Dr. Jolan Walter University of South Florida at Johns Hopkins All Children’s Hospital and Dr. Kevin Strauss at Clinic for Special Children in the United States.

Our research concerns developing a gene editing technique in the laboratory for patients inheriting a combined immune deficiency due to a defective recombination activating gene 1 (RAG1). This gene functions in the normal development of T and B cells of the immune system. Patients with RAG1 deficiency may have prolonged or recurrent infections, and/or immune dysregulation appearing as autoimmune or inflammatory disorders, which could be fatal if not treated. Restoring the function of this gene in the laboratory could eventually lead to marked improvement or even a cure in patients with this serious genetic immune deficiency.

At the University of South Florida, Joseph Dasso, MD, PhD, has spearheaded the grant writing process with Jolan Walter, MD, PhD, and Krisztian Csomos, PhD, will lead B cell receptor repertoire investigations. The team of Ayal Hendel, PhD, will perform genome editing of RAG1 combined immunodeficiency, whereas that of Raz Somech, MD, PhD, including Yu Nee Lee, PhD, will investigate T cell receptor repertoires. The clinical team of Kevin Strauss, MD at the Clinic for Special Children will work with patients from the Mennonite and Amish communities in the United States. Collaborators at other national and international institutions may also contribute patients to our study, which could not be possible without many clinicians and scientists working together around the globe. We thank the families, our research and clinical team members, and the Jeffrey Modell Foundation.

See the latest publication of Drs. Hendel and Somech related to the technical approach in our study.

https://www.sciencedirect.com/science/article/pii/S2162253122003237?via%3Dihub

 

 

A New Year’s Letter from our Executive Director

Friends,
The Clinic for Special Children serves as a beacon of hope for the hundreds of families that walk through our doors each year. From providing answers to complicated medical questions to conducting groundbreaking research on rare genetic disorders, our interdisciplinary team works every day in service of the Clinic’s mission.

It’s only because of your unwavering support that we’re able to build hope for families facing rare genetic disorders. As we enter our 34th year of operation, we are reminded of the promises of our mission – to provide care to the most vulnerable, to continue searching for affordable and accessible treatments, and to serve the community of families that seek our care.

Sincerely,

Adam D. Heaps, MS, MBA
Executive Director