Support children with rare genetic disease, like Ian!

The Lapp family graciously wrote about their journey with their son, Ian’s, diagnosis of Glutaric Aciduria type 1 (GA1) and the Clinic for Special Children for our Annual Giving Appeal.

You can read their handwritten story below, with an opportunity to give children, like Ian, a bright future.

Continue reading Ian’s story HERE

How Can You Give?

Make a donation online with credit card: Give Here

Mail your gift with cash or check: Click Here

Over $73,000 raised during 2019 Extraordinary Give!

On Friday, November 22, 2019 over 290 Extraordinary people made a donation to the Clinic for Special Children with over $73,000 raised!

With the help of all of our donors, we surpassed our goal of $70,000 for this year’s ExtraGive! In 2018, $62,000 was raised for CSC through the ExtraGive.

The ExtraOrdinary Give is Lancaster County’s largest day of online giving. This year over $10.9 million was raised for over 500 local non-profit organizations.

Thank you for your support!

2019 ExtraGive | Support CSC on November 22nd!

Support the Clinic on Friday, November 22nd during the 2019 ExtraGive!

The countdown to the 2019 Extraordinary Give is on! Will you help us reach our goal of $70,000 raised for the Clinic in 24 hours?

On Friday, November 22, 2019 donations will be accepted from 12 midnight – 11:59 PM as part of Lancaster County’s largest day of online giving.

Donating is simple. On Friday, November 22, 2019 visit and select ‘Clinic for Special Children’ as your non-profit of choice.

If you would prefer to donate over the phone, please call us at 717-687-9407 between 9am-5pm and we would be happy to receive your gift over the phone.

Visit us on Friday, November 22 from 11am-3pm in Lancaster City at Penn Square by Central Market for our annual Whoopie Pie Toss!

For additional information, please contact Kelly Cullen at 717-687-9407 or

CSC adds three new members to Board of Directors

The Clinic for Special Children has added three new members to our Board of Directors.

Peter B. Crino, MD, PhD, Stephen Tifft, MD, and Glen Zimmerman will be joining the Board of Directors effective October 2019.

Peter B. Crino, MD, PhD is an internationally recognized physician-scientist specializing in developmental brain disorders. Stephen Tifft, MD, is the Managing Physician and a Pediatrician at Roseville Pediatrics, Lancaster General Health Physicians, and Glen Zimmerman is Owner/Operator at Raytec, LLC.

To read more about each of the new members, visit our Fall newsletter (pg. 2)  HERE.

$40,000 raised and over 350 registrants for the 2019 Clinic for Special Children 5k!

THANK YOU to everyone who came out on Saturday, September 21st and made our 2nd annual Clinic for Special Children 5k such a success!

Because of you and over 350 registrants, a total of $40,000 was raised to benefit the Clinic!

The race results are posted on the Pretzel City Sports website here.

To view more photos, please visit our Google Photos link here.

And a BIG thank you to our sponsors and volunteers who made this event happen!



Register for 2019 Clinic for Special Children 5k today!

Join us for our 2nd annual Clinic for Special Children 5k on Saturday, September 21st, presented by Nemours Children’s Health System!

There will be a kid’s fun run, bake sale, silent auction, and children’s crafts planned for the day! Proceeds support the mission of Clinic for Special Children, a medical home for children and adults living with rare genetic disease.

Online application HERE        Paper application HERE 

Runners, joggers, and walkers are invited to join us for 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 Amish farms.

WHERE: The race begins and ends at the Clinic for Special Children, 535 Bunker Hill Road, Strasburg, PA 17579.

TIMES: 9:00 a.m. start for 5k race. Awards ceremony, kid’s fun run, silent auction, and bake sale following the race.

Race day registration will be open from 7:45 – 8:50 a.m. Packet pick-up will be available Friday evening from 5-7 p.m. and race day morning at the Clinic.

$25 if registered by Sept 2, includes goody bag and t-shirt (Entry and payment must be received no later than
September 2)
$30 after September 2 (including race day), includes goody bag and t-shirt while supplies last

FREE Kid’s fun run for ages 7 & under. Fun run dash starting immediately after the 5k awards ceremony.

Online registration available at (nominal service fee, closes at midnight, Wednesday, Sept. 18).

If paying via check, make payable to Clinic for Special Children.

Mail registration form & payment toClinic for Special Children, Attn: Kelly Cullen, PO Box 128, Strasburg, PA 17579

PRE-PACKET PICK-UP: available Friday, September 20 between 5-7 p.m. and race day from 7:30-8:30 a.m. at Clinic for Special Children.

AWARDS: Medals will be awarded to: 1st overall male and female and top 3 males and females in the following categories: 14 & under, 15-19, 20-29, 30-39, 40-49, 50-59, 60-69, 70+.

QUESTIONS: Contact Kelly Cullen at or 717-687-9407

CLICK HERE to follow our Clinic for Special Children 5K Facebook event for information updates and newest event details.

Presenting Sponsor

2019 Clinic for Special Children 5k to feature Whoopie Pie Medals

(Strasburg, PA August 2019) The Clinic for Special Children, a non-profit medical home for children and adults with rare genetic diseases, is hosting its 2nd annual 5k race on Saturday September 21st at 9a.m. The race will begin and end at the Clinic (535 Bunker Hill Road, Strasburg, PA, 17579). All proceeds from the event will support the mission of the Clinic. Whoopie pie medals will be awarded to the first, second, and third female and male runners in the following age groups: 14 & under, 15-19, 20-29, 30-39, 40- 49, 50-59, 60-69, and 70+.

Read the full press release HERE!

For all the details on the 5k and to register, visit our 5k site HERE.

Our new book, 30 Stories for 30 Years, is available for purchase!

The Clinic for Special Children published a new book entitled 30 Stories for 30 Years. The 30-year history of the Clinic for Special Children is told by first-hand accounts of those who’ve walked through our doors.

Read handwritten, first-hand stories and experiences of those who’ve bravely faced rare genetic diseases. Learn more about how rare genetic diseases aren’t so rare for those who have them.

And most of all, share compassion for those who aren’t so different from yourself.

Order your copy of 30 Stories for 30 Years online HERE or call the Clinic at 717-687-9407.

Transplant Changes Boy’s Life – Clinic for Special Children Guides Family Toward Light & Joy

Article by Anne Harnish, Food and Family Features Editor at Lancaster Farming

NEWMANSTOWN, Pa. — Fourth-grader Shane Musser likes to be on the move, says his mom, Rose Musser.

“He’s very determined,” she said. “He falls down a lot, but keeps trying and trying. He doesn’t give up.”

Rose is talking about Shane’s persistent desire to walk better, bicycle, swim and do many other activities. He attends a local elementary school with the help of a mobility chair and a personal caregiver, but copes with some brain damage caused by a rare genetic condition. The condition, called Crigler-Najjar Syndrome, or CNS, affected him as a baby up until 4 years old when he had liver transplant surgery at the Children’s Hospital of Pittsburgh.

Click to read the full article

Novel Next Generation Sequencing Assay for Carrier Screening in Plain Populations Identified

STRASBURG, PA- A new study has identified a novel next generation sequencing assay to carrier test for autosomal recessive disorders found in the Old Order Amish and Old Order Mennonite (Plain) populations. Due to the small number of founders and a phenomenon known as genetic drift, the Plain communities show relatively high carrier rates for a small subset of genetic diseases.

Read the paper here

Read the full press release here


Clinic Volunteers Featured in April Issue of Lancaster County Magazine

Clinic for Special Children volunteers, Carlyn Darby and John Thackrah, were featured in the April issue of Lancaster County Magazine. They explained “Why I Love to Volunteer” and the various ways that they support the mission of the Clinic. We are so thankful to everything they do to support us!


Click the photo below to read the article!


Researchers identify novel mass spectrometric quantification method of plasma GSL’s in GM3 ganglioside deficiency

STRASBURG, PA- Researchers from the Clinic for Special Children and University of Georgia have identified a novel mass spectrometric quantification method of plasma glycosphingolipids in human GM3 ganglioside deficiency. Human genetic disorders affecting early steps in glycosphingolipid (GSL) biosynthesis promulgate devastating neurological consequences. The research is published in the recent edition of Clinical Mass Spectrometry.



Jesse Crain’s (Retired MLB White Sox player) family foundation hosts CSC fundraiser

Each year the Crain Family Foundation organizes a special philanthropic event at the TopGolf in Scottsdale, AZ called ‘Swing Fore the Kids’. The Crain Family Foundation was founded by retired White Sox MLB pitcher Jesse Crain and his wife, Becky Crain. The foundation partnered with Kris and Maureen Newkirk, parents of a child cared for by our Clinic, Charlie Newkirk. Seeking the best care for their son living with a rare genetic disease called Glutaric Acidemia Type 1, Kris and Maureen traveled from Arizona to the Clinic for Special Children.

This event gathers over 80 professional athletes and coaches, community members, family and friends, children with rare genetic disorders and others throughout the nation who share a passion for raising awareness for rare diseases.

The night features opportunities to hit some golfballs with professional athletes & celebrities, bid on a variety of items at their silent auction, and enjoy great food & drinks in support of the Clinic for Special Children’s cause.

We’d like to extend a heartfelt THANK YOU to everyone involved in putting on this great event, especially Jesse and Becky Crain, and Kris and Maureen Newkirk!

Plain Insight Panel featured on Lancaster Newspapers/LancasterOnline

The Clinic for Special Children’s new Next Generation Sequencing technology was featured in an article on Lancaster Newspapers/LancasterOnline.

Since 1989, the Clinic for Special Children in Strasburg has been identifying and treating rare genetic diseases among Plain sect people, including the Amish and Old Order Mennonites. Now, leaders of the nonprofit say, a new DNA testing method called next-generation sequencing lets them check at one time whether a person is a carrier for many of those diseases. “We’ve been talking about this for a long time, and the technology just wasn’t quite there,” said clinic executive director Adam Heaps. “We really feel like this is an opportunity to anticipate the disorders that we’re going to see and where we’re going to see them.”


Click HERE to read the entire article.

Researchers Publish Largest Description of ST3GAL5 (GM3 Synthase) Deficiency

STRASBURG, PA- Researchers have combined the largest description of ST3GAL5 (GM3 synthase) deficiency using detailed natural history data from 104 individuals of Amish ancestry born between 1986 and 2017 with a definite or probable diagnosis of ST3GAL5 deficiency. The study examined objective measures of biochemistry, auditory function, brain development, and caregiver burden. GM3 synthase is encoded by ST3GAL5, and is essential for synthesis of the most biologically relevant gangliosides in mammals. The study, led by clinicians, represents a collaborative effort by the Plain Community Health Consortium (PCHC). PCHC is a network of non-profit clinics across five states that diagnose and treat rare genetic disorders in children from the Anabaptist communities.

Read the full press release here

Read the paper here


Clinic Featured on SMA News Today

The SMA News Today team visited our Clinic and wrote a comprehensive piece on what we do at the Clinic,

especially with our recent work on Spinal Muscular Atrophy.


“Visitors to the Clinic for Special Children (CSC) just outside Strasburg, Pennsylvania,

might be forgiven for thinking they’ve made a wrong turn. Hidden at the end of a long, winding

driveway off Bunker Hill Road, the clinic, which serves the Amish and Mennonite

communities of Lancaster County and beyond, looks and feels like a 19th-century

schoolhouse, with its timber-frame construction and kid-friendly decorations.”


To read the entire article, click the link HERE.

Dr. Kevin A. Strauss Speaks at Israel Society for Metabolic Disease (ISMD) Meeting


On Wednesday, January 23, 2019, Dr. Kevin A. Strauss attended the Israel Society for Metabolic Disease (ISMD) Annual Meeting as an invited speaker in Petach Tikvah, Israel. During the meeting, Dr. Strauss delivered talks entitled ‘Plain People and Precision Medicine’ and ‘Challenge and Opportunity: Gene-Based Therapies for Rare Disorders.”


To learn more about the Schneider Children’s Medical Center (where the meeting was held), visit the link HERE.

2019 Benefit Auction Dates Announced!

Join us for our 2019 Auction Season!

Each auction promises a day of fun, fellowship, and good food!


7:00 a.m. Breakfast | 8:30 a.m. Auction Begins | Physician Remarks and Quilts to Follow

Union County Auction

Saturday, June 1, 2019

Friday, May 31, 2019 | Rib Dinner & Flower Auction | 5-8 p.m.

Buffalo Valley Produce Auction
22 Violet Road
Mifflinburg, PA 17844

⇒ Directions

Lancaster County Auction

Saturday, June 15, 2019

Leola Produce Auction
135 Brethren Church Road
Leola, PA 17540

⇒ Directions

Shippensburg Auction

Saturday, June 22, 2019

Cumberland Valley Produce Auction
101 Springfield Road
Shippensburg, PA 17257

⇒ Directions

Shiloh, OH Auction

Saturday, July 13, 2019

Blooming Grove Auction, Inc.
1091 Free Road
Shiloh, OH 44878

⇒ Directions

Memphis, MO Auction

Saturday, August 17, 2019

Ed’s Machinery
17920 US Hwy 136
Memphis, MO 63555

⇒ Directions

Blair County Auction

Saturday, September 14, 2019

Morrison’s Cove Produce
174 Windy Acres Lane
Roaring Spring, PA 16673

⇒ Directions

Clinic for Special Children’s Work Highlighted in USA Today

The Clinic for Special Children’s work was recently highlighted in partnership with Nemours/A.I. duPont Children’s Hospital in an article on USA Today & Delaware News Journal. The story is titled “Saving Grace: Amish families are working with doctors and researchers to save a young girl’s life ” and was written by reporter Meredith Newman with photos and video by Jennifer Corbet.

Click the link HERE to read this heart-touching story.