Reaching Out

The Newsletter of the Cornelia de Lange Syndrome (CdLS) USA Foundation, Inc. First Quarter 2017

Highlights

Director’s Message: Welcoming the New Year and New Leadership

Spotlights: How to Identify Esophageal Obstruction

Healthy Coping Skills

Super Relatives Emily, Colin and Samuel

302 West Main Street, #100 Avon, CT 06001-3681 860.676.8166 toll free: 800.753.2357 fax: 860.676.8337 www.CdLSusa.org 302 West Main Street #100 Avon, CT 06001-3681 800.753.2357 • www.CdLSusa.org Director’s Message Welcoming the New Year and New Leadership Dear Friends,

I am happy to write to you to introduce myself as the Executive Director of the Cornelia de Lange Syndrome Foundation. I am honored to have the opportunity to work in partnership with all of you to help evolve our Foundation into the future. As I learn more about the details of the work of our great organization, I feel indebted to the many great leaders and volunteers of the past who have put us in a position to step boldly into the future.

Just a word or two about me – my career has largely been focused in the customer service industry and I have held various leadership roles in the non-profit and for profit industries. However, my love and passion is helping young people achieve their full potential. When not working, you will find me talking and meeting with young people, taking walks in nature, or with my nose in a great book. I am a mom of 3 (2 in college) and a wife for 32 years to my friend, Anthony. My husband and I are actively involved in our community and always there to lend a helping hand to our neighbors and friends.

In just the first few weeks of joining the CdLS Foundation family, it has been apparent to me that the Foundation has been a beacon of hope for the families and their loved ones who live with this rare genetic syndrome. The very bones of our organization were built on compassion for others who share our destiny to love and learn from our loved ones with CdLS.

As we take stock of the last 40 years of the Reaching Out publication and move forward together we want to share more of your stories. We want to find new and innovative ways to share your struggles, milestones, and triumphs with others who may find themselves having a similar experience. It is our hope, that in this way we can grow our family base and circle of friends.

I am proud of how far we have come, and excited for the future we will create together as we continue growing, learning, and evolving as the premier organization leading the way in supporting the resilience of our CdLS families and friends.

Sincerely,

Bonnie Royster Executive Director

Our Mission In This Issue The Cornelia de Lange Syndrome Foundation How to Identify Esophageal is a family support organization that exists 4 10 Event Highlights Obstruction to ensure early and accurate diagnosis of Then and Now: A Review CdLS, promote research into the causes and 6 Healthy Coping Skills 12 manifestations of the syndrome, and help of the First Edition of Super Siblings- Emily, Colin Reaching Out people with a diagnosis of CdLS, and others 8 and Samuel with similar characteristics, make informed 14 Board Corner decisions throughout their lives. 9 On the Cover: George

REACHING OUT 2 www.CdLSusa.org 302 West Main Street #100 Avon, CT 06001-3681 800.753.2357 • www.CdLSusa.org Reaching Out Published Since 1977 New Initiatives (ISSN 1097-3052) Cornelia de Lange Syndrome By Antonie Kline, M.D., CdLS Foundation Medical Director Foundation, Inc. Incorporated December 1981 email: [email protected] In 2017 we will introduce three new family-related www.CdLSusa.org initiatives for the CdLS Foundation. These will be relevant for the Foundation parents, caregivers, family members, BOARD OF DIRECTORS and adults with CdLS. President. . . Richard Haaland, Ph.D., GA Vice Presidents...... Siblings Program ...... David Barnes, Esq., NH ...... Wendy Kaplan-Miller, Esq., CA Siblings have always played a huge part in the CdLS Treasurer ...... Eric Johnson, CT Secretary...... Patrick Lyons, NH Foundation, not only because they are an intimate part of the family, but also because they are involved in the day-to-day care of a person with CdLS. At the Directors...... CdLS National Family Conference, siblings meet others of similar age, and ...... Catherine Caron, NH often discuss their desire to have a larger role in the Foundation. Over the years, ...... Dennis Drislane, CA ...... Mike Feehan, PA brothers and sisters have combined their creative minds to produce new ideas ...... Lynne Kerr, M.D., UT for sibling-driven initiatives, including: running specific events at Conference, ...... Jim Kesting, MO writing articles for Reaching Out, and assisting in the day-to-day operation of ...... Katherina Nikzad-Terhune, KY ...... Julia O’Connor, Ph.D., MD the Foundation. But that is just the beginning of a sibling’s possible journey; we ...... Emily Turner, AL currently have a sibling who is President of the Board of Directors, and another ...... Angie Young, FL that sits on the board! Thus, we are launching a new siblings group, providing opportunities for those 16 years of age and older. This would be a fabulous and enriching experience to include on your resume! PROFESSIONAL STAFF New Resources EXECUTIVE DIRECTOR Bonnie Royster Resources are some of the most important tools the Foundation has to offer. MEDICAL DIRECTOR We have always sent welcome packets to new families and professional providers Antonie Kline, M.D. who express interest. For the last decade, literature written in Spanish has been FAMILY SERVICE MANAGER Deirdre Summa, L.M.S.W. a growing need, and we now have sufficient resources to be able to provide Facing the FAMILY SERVICE COORDINATOR on a larger scale. The next publication the Foundation will print is Lynn Audette, L.M.S.W. Challenges in Spanish, a core resource for caregivers. Various forms of literature are crucial for families, especially at the time of diagnosis of the child. From One DEVELOPMENT MANAGER Kristi Larson Dad to Another is a resource for fathers of children and adults with CdLS. This publication highlights coping mechanisms and mindfulness techniques to reduce GRAPHIC DESIGNER/WEB MASTER Francesca Scognamiglio stress and maintain a positive outlook on diagnosis and life. OFFICE COORDINATOR Adults with CdLS Network Susan Salina COMMUNICATIONS COORDINATOR Finally, at the past few National Conferences, we have had a private meeting for Samantha Manns adolescents and adults with CdLS who want to meet each other, communicate in the future and have an opportunity to expand their world together. This has been so successful that the Foundation is proud to expand the network for Adults with CdLS. The “Connect with Peers” feature is an online form that will allow All information contained herein is for the adults with CdLS to request to be matched with other adults within their state, reader’s personal interest. Articles on treatments, region, age group, or by hobbies. medications, or procedures, etc. are not guides for self-treatment. Questions should be discussed with your doctor or other appropriate professionals. The These are just some of the new initiatives at the Foundation that we look forward CdLS Foundation does not endorse any product to launching. advertised and/or mentioned in Reaching Out.

1.800.753.2357 3 First Quarter 2017 302 West Main Street #100 Avon, CT 06001-3681 800.753.2357 • www.CdLSusa.org How to Identify Esophageal A Closer Look: Eli Obstruction

By Carol Potter, M.D., Associate Thank you to Eli’s mom, Professor of Clinical Pediatrics at Bethany, for submitting his story the Ohio State University and Eli is a happy, rather healthy Nationwide Children’s Hospital 5-year-old. About a year ago and member of Clinical Advisory he seemed to be congested and Board/CdLS Foundation had extremely stinky breath. Just because a child doesn’t We made an appointment with eat, doesn’t mean they won’t his primary doctor. He gave us swallow things they shouldn’t. I an antibiotic, except it didn’t have a little friend with CdLS from whom I have removed help at all. We went back to his several swallowed objects from, including batteries, doctor who told us he thought it was MRSA. He gave barrettes and hair ties. None of the events were witnessed, us a bacterial antibiotic. This took the smell away, but as or even suspected until several days later. soon as we completed the medicine regimen, the odor came right back. The odor just kept getting worse. Symptoms of swallowed foreign bodies are varied, and may not be present. A child may cough or gag if the object It got to the point that if you were in the same room as is in the esophagus or airway. They may not want to eat Eli, you could smell it. Our family attended conference or not be able to swallow their secretions. If the object is in 2016 and saw specialists who we thought could help. in the stomach, they may have intermittent vomiting or We saw a dentist and GI doctor who gave us great advice, discomfort. More serious complications such as bleeding but it didn’t lead to the source of the odor. We then made or severe infection may occur if the object erodes through an appointment with an ENT. The first one we saw told the gastrointestinal tract. us that we needed to brush his teeth really well, which we had been doing from the beginning. I tried to push them Button batteries in the esophagus are an emergency, as to do a scope because I had seen other kids with things they start to cause significant tissue damage within 15 lodged in their airway. They looked at me like I was crazy. minutes. Another serious ingestion are high powered magnets like “Buckyballs.” These dangerous objects Our primary doctor finally got us a referral to another were previously removed from the market, but recently ENT who said he believed it was chronic adenoiditis. He returned to stores. The balls are easy to swallow and cause recommended a sleep study to see if they should take his perforation when tissue is caught between two magnets. tonsils out as well. We had the sleep study and it showed They should be discarded so children can’t play with them. that Eli had sleep apnea. The ENT said that he could not see his tonsils by just looking in his mouth. Therefore, they Foreign bodies can be hard to find if they aren’t metal, as decided to do a scope, takeout his adenoids, and possibly they may not show up on X-ray. A variety of diagnostic his tonsils depending on what they found. The day he tests can be performed to detect them, but you need to went in for surgery he was only in the OR for about 20 think about ingestion with unexplained symptoms if you minutes. The doctor came out with pictures and told us are going to find them. that Eli had a Band-Aid lodged behind his uvula. The adenoidectomy was cancelled, and I went to see Eli in recovery. The smell was gone!

Since we have been home, the smell has not returned. Eli is not congested, his eyes are less runny and he has had no problems with his ears. He is all-around a much happier, more verbal child now.

REACHING OUT 4 www.CdLSusa.org 302 West Main Street #100 Avon, CT 06001-3681 800.753.2357 • www.CdLSusa.org CdLS Registry

CoRDS, or the Coordination of Rare Diseases at Sanford, Equipment Exchange is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international The CdLS Foundation has researched existing patient registry for all rare diseases. This program allows programs that offer equipment exchange. patients and researchers to connect as easily as possible The top sites that were user-friendly and to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, inclusive of many types of medical and individuals and researchers to help in the advancement adaptive equipment are highlighted. We of research in over 7,000 rare diseases. The registry is free encourage you to visit the sites to see what for patients to enroll and researchers to access. is available or consider using them to offer equipment and/or medical supplies you no longer need. You can find the sites posted at the bottom of the main page of our website Enrolling is easy: www.CdLSusa.org under “Outside Links.” 1. Complete the screening form.

2. Review the informed consent.

3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

1.800.753.2357 5 First Quarter 2017 302 West Main Street #100 Avon, CT 06001-3681 800.753.2357 • www.CdLSusa.org Healthy Coping Skills Adapted from www.abilitypath.org Characteristics of Positive Coping Justyna Wawrzonek, L.M.S.W. 1. Strong spousal relationship Impacts of Stress on Parents, Caretakers 2. Positive self-esteem and Families 3. Being proactive Parents and caretakers of children with CdLS are likely to experience 4. Acceptance of the reality of child’s disability increased stress due to the challenging realities of raising a child with special 5. Positive thinking needs. They may often find themselves juggling the daily needs of their family with medical appointments, school 6. Seeking information and resources meetings and advocating for services, in addition to the 7. Accepting help many other demanding tasks associated with caring for their family. 8. Being an active advocate

Parents and caretakers may also be burdened with financial 9. Seeking social support pressures, as not all services are covered by insurance. Siblings may experience a heightened level of stress due 10. Focus on internal locus of control to feeling overlooked or overly relied upon, as well. 11. Taking direct action to change the situation

Stress can impact our health and can greatly affect our 12. Validation of one’s feelings relationships with partners, friends and, most importantly, our children. Parents and caretakers of children with 13. Gaining a sense of empowerment through helping CdLS and other disabilities may often feel isolated in their others experiences. It is crucial that they take time to recharge and relax, especially in times of high stress. 14. Taking pride in child’s accomplishments

Adapted from www.abilitypath.org Adapted from the British Journal of Developmental Disabilities Healthy Ways to Cope with Stress Tips for Parents and Caretakers of a Child with CdLS 1. Practice mindfulness • Learn as much as you can about CdLS 2. Take time for yourself • Know your child’s triggers 3. Express and share your feelings • Understand what soothes and calms your child 4. Take care of your own health • Find programs and services to help your child 5. Ask for what you need • Talk about how you’re feeling 6. Accept help • Don’t compare your child to other children 7. Utilize respite care • Join a support group 8. Focus on things you can control • Be consistent 9. Seek support from other parents and caretakers • Stick to a daily routine 10. Seek support from a professional

REACHING OUT 6 www.CdLSusa.org 302 West Main Street #100 Avon, CT 06001-3681 800.753.2357 • www.CdLSusa.org • Reward positive behavior support and attention. If cues are missed, children may escalate their behavior to a point where they completely • Take it one day at a time lose control.

• Create a “safe zone” for your child It may also be helpful to consider how you can change your behavior to help your child cope. For example, • Celebrate child’s successes if your child’s stress increases as you get dressed each • Love and accept your child for who they are morning, a picture schedule may be helpful for your child to anticipate what’s next. Adapted from www.womenshealth.gov It is also essential that parents, caregivers, teachers, and Helping Your Child Develop Coping Skills all other professionals who spend time with the child work together to share information about his or her cues Providing your child with healthy tools for coping may and triggers. also have a positive impact on your wellbeing. Giving your child tools for healthy emotion regulation can reduce 3. Encourage Healthy Ways of Coping some stress that is associated with your child’s challenging behaviors as they learn to implement healthy coping skills. Think about all the things your child already does to feel good. When you see your child getting upset, point out 1. Give Words to Feelings the coping skills he or she can use, such as holding a toy or blanket that elicits comfort, listening to music or other Strong emotions can be scary for children, and they can calming activities. Over time your child may turn to these fuel strong reactions. When children are able to express coping skills on their own. their emotions through a healthy outlet, their emotions may feel more manageable. Keep in mind that a crucial part of how children learn to manage their emotions is through modeling. How • When your child is upset offer him/her words adults express and mange their emotions will influence to use such as mad, sad, frustrated, anxious, and the reaction of a child. embarrassed. If your child is non-verbal, you can offer a picture representation of emotions and allow your 4. Brainstorm Specific Coping Strategies child to identify the emotion. If your child doesn’t already have particular activities that • Ask your child to tell or show you where he or she is calm him or her down, help your child develop ideas. feeling the emotions in the body. Remind them of these when you begin to notice your child’s “cues”. 2. Find Your Child’s Triggers 5. Be Present and Understanding Think about which situations are toughest for your child. Children with disabilities generally have specific When your child feels emotional, give him or her your “triggers” such as words, images or sounds that signal full attention. If your child sees you distracted, he or danger or disruption to their feelings of safety and security. she may feel even more upset. Being present, offering Children tend to develop their own “cues” in response your full attention, practicing active listening through to these triggers. Parents and caregivers can learn how to restating what your child has shared, and asking related “read” these cues to understand when the child is having questions are helpful ways to help your child manage his difficulty. These cues may include facial expression or or her emotions. nervous tics, changes in speech patterns, sweating, feeling ill, becoming quiet or withdrawn, complaining or getting Continued on page 15 irritable, exhibiting a fear or avoidance response, etc.

When you anticipate your child’s triggers or observe these cues, it is important to provide your child with assurance,

1.800.753.2357 7 First Quarter 2017 302 West Main Street #100 Avon, CT 06001-3681 800.753.2357 • www.CdLSusa.org Super Siblings - Mailbag – Stephen Emily, Colin and Samuel If you are reading this, then you Thank you to Emily, Colin and Samuel’s sister, for sharing must get the CdLS newsletter. If her story with us. you read them cover to cover as I do, you would have read an update on My relationship with my brothers is pretty typical of Stephen in the first quarter of 2016. brother-sister relationships. While I sometimes wish As my Stephen says, being disabled I knew what it was like to have a “normal” brother, I does not mean unable. How true wouldn’t trade them for anything. that was back in July of this year. Growing up, Colin and I were typical siblings. We fought, My loving and adorable child—adult—saved his father’s and sometimes we still do. I recently moved away from life! I was on my way home when my cell phone rang. home again, and I think that has helped our relationship Being only two minutes from home, I did not answer. I in some ways because we seem to get along better. Colin drove around the corner to find an ambulance in front of loves to send messages on Facebook at all hours of the the house and several other vehicles in the road. day. His current obsession is bubble wrap, so he is always asking for “590 bubble wraps” or some other random Stephen had his phone in his hand and said Dad fell amount. He also loves to be funny and make jokes to down the cellar stairs. His father was in a car accident make people laugh. the day before. Due to whiplash, Stephen’s father passed out and fell. He landed on the hard cement floor and was bleeding pretty bad.

I followed the ambulance to the trauma center by myself. I reluctantly left Stephen behind because our pets needed to be taken care of. I could not leave the hospital because his father’s injuries were life threatening; he was bleeding inside his skull and had broken every bone in his face. I had to remain there for three days and two nights. I never

Colin, Krista, Samuel, Emily, and Rapunzel at Disney before even left the room. Conference last year. The next day I was told by a visitor what a great job Parents may say they don’t have a favorite child, but Stephen did. He knew to call 911 and get help started Colin, my sister, and I all agree that we have a favorite before calling me. They kept asking him to check his father sibling: Samuel. I was 18 when we adopted Sam, who was for certain things. Stephen told me this was difficult to nine months old. I wished for a “little” brother and he is do and still hold onto the phone. Usually, Stephen’s first certainly little! Until about a year ago, I lived at home for reaction about anything is to call Mom. Stephen did an a while and did respite care for both my brothers. Now awesome job taking care of himself, the house and his that I’ve moved away, I love when I come home to visit pets. He was very understanding that I couldn’t come because Sam gets excited to see me and does his little and get him to bring him to see his father. “Sam dance.” I told Stephen he deserved a very special reward, but I did He doesn’t care to be picked up and hugged or cuddled, not know what it could be. Stephen told me he did what but that doesn’t stop me from trying. He loves to get had to be done. According to him, he needed nothing. attention and knows when all eyes are on him because He said he has everything he needs. That is, as long as he starts acting goofy. When he gets the giggles you can’t our cookie jar is never empty! help but laugh with him. He certainly is an entertainer. I’m glad I have my brothers and wouldn’t want them any To all the wonderful CdLS families, other way. Robin Marris, Stephen’s mom

REACHING OUT 8 www.CdLSusa.org 302 West Main Street #100 Avon, CT 06001-3681 800.753.2357 • www.CdLSusa.org On the Cover: George 28th Missouri Golf Tournament

George is 27 years old and The CdLS Foundation held its 28th annual CdLS lives just outside Fresno, Charity Golf Tournament at the Tapawingo National California. He attends Golf Club in St. Louis, MO., on October 10, 2016. a daily adult program at the Diamond Learning Anniversary Sponsors, Madison County Wood Products Center, and really enjoys and Pallet Logistics Management, hosted the annual it. George also loves music event in honor of Vice-President Doug Gaines’ and attended his first daughter, Amber, who has CdLS. concert last March. He Jim Morton works for MCWP, and is a longtime friend was so excited to finally see of Gaines’. “The event was a success as we raised so much Justin Bieber-live. for the Foundation. Doug’s daughter has CdLS, so it is Some of his favorite pals are not what you’d expect— very near and dear to our hearts,” Morton said. they’re animals! George currently has a box turtle and One hundred and sixty five people attended the three tarantulas; his most recent is a Mexican Red Knee tournament, which is an average turnout, according to tarantula. He is very fascinated with other spiders and Morton. Participants enjoyed 18 holes of golf, lunch, reptiles as well, and has decorated his entire bedroom with dinner, beer, soda, and snacks on the course, along with three feet replicas. George is so fearless that he even lets the opportunity to win both skill and door prizes. some lizards climb on his chest and shoulders! Since 1989, the CdLS Charity Golf Tournament has Though his family has regretfully missed the most recent raised more $607,000 to help people with CdLS live gatherings in California, they hope that another is better, fuller lives. This year over $45,000 was raised, all scheduled soon so they can spend time with friends from of which will benefit the CdLS Foundation. the CdLS community. The tournament was sponsored by Madison County Wood Products; Pallet Logistics Management; TAG Truck WELCOME NEW FAMILIES Center; Crown Machinery; Weiss & Associates; Rustic Wood Products; Pennsylvania Indiana Lumbermans and California Massachusetts Mutual Insurance Company; Union Machinery; Magnum Jeitzen and Steven and son Krystal and daughter born Fasteners; Montgomery Bank; PECO Pallet; MFA Oil; Steven born August 25, 2014 December 16, 2011 Walt’s Drive-A-Way Services, Inc.; Cass Commercial Illinois New York Bank; United Lumber & Reman, LLC; and the Kesting Megan and Russell and son Shanshan and daughter Hannah and Dieck family. Charles born May 11, 2016 born on May 17, 2016 Missouri Golf Committee Members, Jim Kesting, Doug Kansas North Carolina Gaines, Bryan Kesting, Paul Gaines, Jim Morton, Cheri Samantha and Jake and Destiny and Nicholas and son Colby, and Steve Snodsmith are grateful of the continuous daughter Alice Kristian born July 13, 2014 born August 7, 2016 support of the sponsors, donors and attendees of the events.

Interested in being a part of a Golf Tournament Committee or attending the 2017 event? Contact: Kristi Larson, Development Manager, 800.753.2357 or Share your Mailbag or [email protected]. Super Sibling Story!

Send your story and photo to [email protected].

1.800.753.2357 9 First Quarter 2017 302 West Main Street #100 Avon, CT 06001-3681 800.753.2357 • www.CdLSusa.org Event Highlights: Walk for Will and Hope Maureen Feighan-Kurth and husband Joel held their One Love, One Heart 5K annual Walk for Will and Hope in Shelby Township, Michigan on October 16. The event is in honor of their On Saturday, December two children with CdLS: daughter, Hope, and late son, 3, crowds lined up at the Will. starting line of the annual One Love, One Heart 5K in Decatur, GA. Runners donned fuzzy hats and long sleeves in the chilly start to winter in honor of the CdLS Foundation.

After a television news program mention, spirits Maureen said to friends on Facebook, “We are touched, were extra high for the humbled, honored, and awed by your generosity.” annual race. Jim and Jen Pomfret started the One Love, One Heart to honor their daughter Maya, now 13 years The leisurely 2-mile walk through the beautiful Stony old, who has CdLS. Creek Metropark was met with its rainiest forecast ever. However, the dedication to the Foundation was Board of Directors member Fran Rissland coordinated demonstrated in the more than $5,000 in funds raised. a segment for the race on Atlanta & Company’s Top This brings the total raised to roughly $35,000 since the Things to Do This Weekend through local traffic reporter walk began in 2009. Christopher “Crash” Clark. Fran met him back in August at the CdLS Brew & BBQ. Mr. Clark even attended the 5K to show support for “a cause near and dear to [his] Sarah’s Bowl heart.” On November 13, the Seventy-four runners blazed 8th Annual Sarah’s the trail and countless Bowl for CdLS rocked others showed their support Batesville, Indiana. along the route, all to raise Teams gathered at East funds for the Foundation. Bowl Family Fun Center Attendance increased an and competed not only astonishing 27% from last in bowling, but in year’s race. fundraising as well. Recognition was given to the teams bringing in the most donations for the CdLS Foundation. The top three female runners were Paula Johnson at 21:20; Amanda Hollingsworth at 24:08 and Ninetta Violante “The CdLS Foundation has provided our family with at 25:37. The top male runners were Patrick Ollinger education, hope and support over the last 11 years,” at 17:04; Fred Glass at 20:09 and Bryce Allen at 21:09. said mother, Anne. “We chose to organize Sarah’s Bowl for CdLS because we want the Foundation’s mission to One Love, One Heart raised more than $13,000 for the continue. The supporters of Sarah’s Bowl are my family’s CdLS Foundation. Thank you to the Pomfret family for biggest supporters. They, just like the Foundation, have their continuous efforts in hosting this event. We can’t always been there whenever we needed them.” wait for next year!

REACHING OUT 10 www.CdLSusa.org 302 West Main Street #100 Avon, CT 06001-3681 800.753.2357 • www.CdLSusa.org Guest Bartender Team CdLS Review Many thanks to our friend David Fowler, brother to Logan, and We’re sure that no group ran harder this year than Team member of Team CdLS. David CdLS. From mud runs to marathons, the team had a big served as a Host Bartender in New event to look forward to almost every two months! York City on December 1. All his The 55 Team CdLS members proudly wore their race tips were designated to the CdLS shirts throughout the country. Collectively, the team Foundation, and over $2,500 raised over $161,000 in 2016 for the CdLS Foundation. was raised. Talk about creative fundraising ideas—and blazers!

Do you have a creative idea on how to raise awareness and funds for the CdLS Foundation? Contact Kristi Larson at [email protected]. The New Year has us doing more than jumping for joy— Team CdLS will be running, biking and much more this season. Our full list of events is available on the calendar below and spots are filling up quickly. Can we count on you to team up for CdLS in 2017?

Contact Kristi Larson at [email protected].

2017 CALENDAR

March 4 April 29 May 13 October 21 Southwest Region 2017 REVEL CdLS Awareness Day 2017 Baltimore Family Gathering Mt. Charleston Nationwide Running Festival Mesa, AZ Las Vegas, NV Baltimore, MD May 22 March 8 April 22-23 25th Annual CdLS Charity November 5 CdLS Clinic at Board of Director’s meeting Golf Tournament 2017 TCS New York City Shriner’s Hospital Hartford, CT Ipswich Country Club Marathon Salt Lake City, Utah Ipswich, MA New York, NY April 30 March 19 Southeast Region October 8 2017 United Airlines NYC Family Gathering 2017 Bank of America Half Marathon Johns Creek, GA Chicago Marathon New York, NY Chicago, IL May 7 April 1 2017 TD Five Boro October 9 Multidisciplinary Clinic for Bike Tour 29th Annual CdLS Charity Adolescents and Adults New York, NY Golf Tournament Baltimore, MD Sunset Hills, MO

1.800.753.2357 11 First Quarter 2017 302 West Main Street #100 Avon, CT 06001-3681 800.753.2357 • www.CdLSusa.org Then and Now: the nominal membership fee to the home address of Sue. Today, families receive all of our services free of charge A Review of the First Edition due to fundraising and grant funding; an innovation in of Reaching Out and of itself after the Foundation’s official non-profit incorporation in 1981. Technology has been astoundingly revolutionized Sue’s 12-year-old daughter Kathy was highlighted for within the past decade, let alone the last 40 years that a large portion of the newsletter, with her mom doting Reaching Out has been published. Imagine in 1977, about accomplishments and struggles throughout her life. without internet or social media, how you would have Aside from individual correspondence with the founders obtained information about the little-known Cornelia de of the publication, this was the first long form of what Lange syndrome? Would you have even heard about the we’d call a “Mailbag” today. diagnosis with such minimal resources and a seemingly vast world? Sue and Carol were developing a parent booklet at the time of the newsletter. Just as revisions were beginning Forty years ago, families of children with CdLS were to take place they decided to not publish it and instead connected through newspaper and magazine articles. The they suggested reading material they found helpful. A first and only program our founders Sue Anthony and few examples of their suggestions were Exceptional Parent Carol Welsh debuted in 1977 was Reaching Out. Nine Magazine; New Dimensions for Parents of Persons Who Are families received the five-page newsletter, in the hopes of Retarded; and Feed Me, I’m Yours. Today, there are countless learning something to benefit their children. There were brochures and pamphlets available for parents regarding no Facebook discussion boards, no biennial conferences CdLS-specific information on medical treatments, adult and certainly no crucial multidisciplinary CdLS clinics. transition, education and more. This is what families faced less than half a century ago. The final article of the first Reaching Out included survey Today, a quick phone call or email to the Foundation results. Over three years, Carol had corresponded with can result in a plethora of informational resources and approximately 16 families and sent out a voluntary contacts for knowledgeable professionals. Numerous questionnaire; 13 families returned it. Landmarks for publications have been also tailored for different people children with CdLS were established by the results, caring for those with CdLS. At the end of 2016 two new including average birth weights, response to affection, booklets were published; one directly for fathers and the and the average age of parents. The most frequent other for caretakers about self-help. This year, the CdLS medical problems mentioned by families included: Foundation reflects on where we’ve been and where we’re feeding difficulties, sitting, upper respiratory infections, headed, and we want to pay homage to the Reaching Out regurgitation, and external physical anomalies. that started it all. As the CdLS Foundation continues to improve its The first issue introduced a grassroots effort to share and outreach and fill gaps in literature for families and learn about CdLS in hopes that “a national organization professionals, it is important to reflect on the progress will meet this need.” Carol and Sue wrote, “We chose we have made in just 40 years. From five pages to nearly Reaching Out as our name because that is our purpose—to twenty, Reaching Out has remained a staple of the support reach out and offer encouragement to as many families continuously provided to families. We are proud to carry as possible.” Their original goals were to offer ideas on on the tradition today and hope you will remain a loyal a variety of topics such as homecare, behavior, reading reader for years to come. materials, personal experiences, and professional opinions. The Foundation also takes this opportunity to extend our The Foundation strives to continue to incorporate the most heartfelt thanks to our founders, Sue Anthony and same sentiments into each newsletter since. Carol Welsh, for starting the tradition of Reaching Out. Original families had to apply for membership, sending in their name, address, phone number, and a check for

REACHING OUT 12 www.CdLSusa.org 302 West Main Street #100 Avon, CT 06001-3681 800.753.2357 • www.CdLSusa.org Celebrate Reaching Out’s 40th Anniversary

It’s hard to believe that the first edition of Reaching Out was published nearly half a century ago. In those times, founders Sue Anthony and Carol Power (pictured left), had just begun organizing a grassroots support In 2017, the Foundation asks you to consider a donation group for families of children th with CdLS. Though they had in honor of Reaching Out’s 40 anniversary, to keep this met only years before through dream alive. A commemorative gift of $40 will support a newspaper article, the cross-country friendship sparked the reimagining of the iconic newsletter that sits before what would later be an accredited nonprofit organization you. Our team is looking forward to creating an updated Reaching Out we know as the CdLS Foundation. design. Your gift will ensure that will continue to serve as a vital resource for all of our CdLS TheReaching Out newsletter was the pair’s only program families. in the summer of 1977. The first edition was created using a typewriter and mimeograph machine—the photocopier Make your commitment by filling out the form below of the time, complete with a windup handle and stencil. and returning it to the Foundation.

Though only nine families were known at the time of the first publication, Sue and Carol sent them the publication. They realized early on how crucial it was for CdLS families Love something in this issue? to know they are not alone. Want to see something else in here? your thoughts about Reaching In 1980, Sue submitted a letter to Exceptional Parent Let us know Magazine, to which 18 families responded by convening Out, and what you’d like to see in future issues, for a picnic in Maryland. And thus, a community by visiting blossomed; a support network grew out of two women’s https://www.surveymonkey.com/r/TKSFMLQ dedication and dream.

‪ Please charge $ ______to my credit card ‪ Once ‪ Monthly for ______months 302 West Main Street #100 Avon, CT 06001-3681 Charge my gift to: VISA MC AMEX 800.753.2357 • www.CdLSusa.org ‪ ‪ ‪ Card #: ______Yes, I would like to contribute towards a Expiration: ______Security Code: ______reimagining of the iconic Reaching Out newsletter! Print name on card: ______Signature: ______Enclosed is my tax-deductible gift of: Mailing address: ‪ Other $ ‪ $500 ‪ $250 ‪ $100 ‪ $50 ‪ $40 Email address: ______‪ I have included the CdLS Foundation in my will or trust. Donate online at www.CdLSusa.org. One hundred percent of your contribution is tax deductible.

1.800.753.2357 13 First Quarter 2017 302 West Main Street #100 Avon, CT 06001-3681 800.753.2357 • www.CdLSusa.org Board Corner Meet the New Board Members

By Richard Haaland, Ph.D., President, Angela Young, Florida Board of Directors; CdLS Foundation Research Committee Chair Angie attended her first family gathering in 1993 in Maryland with As we begin 2017, the CdLS her son, Aaron, and has been active Foundation Board of Directors with the Foundation ever since. She recognizes that we need insight from began as a Regional Coordinator various viewpoints to ensure we are and currently serves as an Awareness Coordinator able to enhance the well-being of all people and families in Florida. Angie hosted her first regional gathering affected by CdLS. The Board welcomes three new in 2001. She continues to bring people with CdLS members this year who each bring a much-needed voice together, providing families with the opportunity to in aspects we deem critical to helping the Foundation meet one another in order to foster support in their improve its current efforts, but also to build new services areas. Furthermore, she has served on the Conference that meet the needs of everyone affected by CdLS. Planning Committee as both co-chair and chair, and was host family for the national conference in 1995. In Much of the success of the biennial CdLS National 2014, Angie was inducted into the de Lange society for Family Conference can be traced back to Angie Young, her more than 20 years of service. who has spent a number of years tirelessly working with the Conference Committee to ensure its success Emily Turner, Alabama on several levels. We welcome Angie’s insight on how to help continue the great tradition of the Conference, Emily earned her Associate of Arts but also identify ways to improve future Conferences. degree in 2015. She was a Girl Scout for 14 years, participating in It has become evident that the Foundation serves a various leadership programs in her growing number of talented and wonderful adults community in Alabama. Along with with CdLS, a growing focus of the Foundation. As an traveling four times on church missions to Guyana, Awareness Coordinator and young adult with CdLS, she has presented at Conference several times and also Emily Turner has been a vocal advocate for all people volunteers. Since 2012, Emily has served as a CdLS with CdLS. We look forward to Emily’s insight in Foundation Awareness Coordinator. Emily is also a helping the Foundation craft new ways to meet the member of the Family Service Committee and actively needs of adults with CdLS and their families. participates in the Adults with CdLS Network. She has tremendous support from her family, who has pushed As the Foundation looks to meeting the growing Emily to live a typical teen and young adult life. needs of everyone affected by CdLS, it must strive to efficiently use its current financial resources and identify Mike Feehan, Pennsylvania novel ways to support new fundraising efforts. Mike Feehan has worked with the Finance Committee for Mike is the Vice President of Finance several years to ensure that the CdLS Foundation is and Treasurer for PQ Corporation, a a responsible steward of its resources, and has sought leading global producer of specialty ways to meet our changing needs. inorganic performance chemicals, catalyst, sulfuric acid, and engineered We thank Angie, Emily and Mike for taking time out of glass materials. He is a graduate of the University their schedules to bring their insight and talents to the of Notre Dame and earned his Master of Business Board of Directors. The CdLS Foundation depends on Administration degree from Villanova University. people like them to help ensure it’s ability to meet the Mike serves on the finance committee and has been a ever-growing needs of all people and families affected Team CdLS runner for seven years – raising more than by CdLS. $125,000 for the Foundation. He also runs in honor of his eight-year-old son, Connor. REACHING OUT 14 www.CdLSusa.org 302 West Main Street #100 Avon, CT 06001-3681 800.753.2357 • www.CdLSusa.org Healthy Coping Skills cont. feel misunderstood or even ignored. Throwing a tantrum or demonstrating other challenging 6. Seek Help When Needed behaviors is their way of communicating their frustration and getting your attention. When you rely on others for help, you show your child that there are many components to a healthy coping 3. Make time for fun. A child coping with CdLS strategy. Connecting with parents, professionals and needs more to life than medical care, therapy and other resources in your community are a few ways you other clinical services. It is important to figure out can obtain help and support, as well as model a healthy ways to have fun as well. Think about the things way of coping for your child. that make your child smile, laugh and become outgoing. There are tremendous benefits that result Adapted from www.understood.org and www.naspoonline. from enjoying your child’s company and from your com child’s enjoyment of spending unpressured time with you. Play is an essential part of learning and Tips for Non-Verbal Coping should not feel like work. Teaching your child healthy coping skills does not have 4. Pay attention to your child’s sensory activities. to rely on language as the form of communication for Some children with CdLS are hypersensitive to expressing feelings and emotions. You communicate with light, sound, taste, and smell. Other children are your child by the way you look, the way you touch, the under-sensitive to sensory stimuli. It is important tone of your voice, and your body language. Your child is to figure out what sensations trigger your child and also communicating to you in many non-verbal ways. It is what elicits a positive response. This understanding important to learn and understand your child’s language can help manage stressful situations and create a in order to best help them cope. more positive experience for yourself and your child. 1. Look for non-verbal cues. Observe the kinds of Adapted from www.helpguide.org sounds your child makes, the facial expressions and the gestures he or she uses when tired, hungry, etc.

2. Figure out the need behind the tantrum. When non-verbal children act out, it is often because you are not acknowledging their non-verbal cues. They

Our Deepest Sympathy

Tyrone Beaty Dallas Charles Corbett Brian Lynch June 7, 1986 – September 27, 2016 November 27, 2000 – November 5, 2016 March 20, 1971 – January 1, 2017 Son of Sherry Beaty Son of Tonya Baker and John C. Corbett Son of Marilyn and Larry Lynch 222 Waddell Road Tonya and Dustin Baker 502 SE 22nd Street Woodruff, SC 29388 806 Merestone Dr Mineral Wills, TX 76067 Winnabow, NC 28479-5196 Darlene Hill And Amanda Liby June 25, 1978 – May 25, 2016 John and Stephanie Corbett March 10, 1992 – December 9, 2016 Daughter of Christel and William Hill 4041 NC Highway 11 Daughter of Lora Wooten and Brian Liby 14573 Handsdale St Kelly, NC 28448-8697 560 General Banks Lane Adelanto, CA 92301 Madison, VA 22727 Randy Hoglund Conrad Alan Hersberger May 31, 1986 – November 15, 2016 March 25, 1990 – November 8, 2016 Son of Patty Hoglund Son of Tammy and Scott Hersberger 4144 53rd Ave. W., Apt. 911 PO Box 427 Bradenton, FL 34210 Lapel, IN 46051-0427

1.800.753.2357 15 First Quarter 2017 302 West Main Street #100 Avon, CT 06001-3681 800.753.2357 • www.CdLSusa.org Donations from 9/16/16 - 1/5/17 Gifts that Count - Brynnlee Beekman Ella G. Musial Hope Kurth Jeremy T. Picazio In Honor/Celebration Bonita Boxell Farrah Kennedy and Sondra Doran Margaret Picazio Kathryn and Peter Wagner Timothy Peterson Elizabeth and Robert Konnik Mary and Glen Dehaven Marilyn Trent Jesse Sosa Alex R. Boneberg Wiladene and Robert Heaston Ella J. Watkins Carol Bloome Mary Caggiano Kate Glenn Maria and JJ Watkins Benjamin Bloome Caleb A. Wherry Michael Reeber Jessica L. Smith Allyson LaRosa Kathy and Andy Wood Emma L. Giberson Jessica Botts Lisa and Roscoe Marter Beth and Mark Smisloff Lesa and Jeff Giberson Mrs. C. Cole Carlee E. Nash Claudina and Anthony Scalise Jim Kesting Alyssa M. Delgado John and Peggy Peeler Emmie Oros Kathleen and Paul Huizdos Nancy and Thomas Bowers Gricelda Contreras Charlene and Norman Francom Anita Kurth Cassandra N. Thompson Laura and Michael Smith Joann Bardis Amanda Drexler Rosa and Eufemio Rodriguez Eric E. Falls Suzanne and Jess Soltess Carol Hoffman Catherine and Richard Ruhe Barbara Falls Maureen Feighan-Kurth and Charles J. Keithley Joel Kurth John D. Barnes Andrea Brennan Lenne Keithley Ethel Silverman Julia and Peter Swanson Mary Waldo Axemen of Ohio Professional Wendy and Jeffrey Gottlieb Joseph and Sheila Howse Firefighters Motorcycle Club Samantha and Seth Barnes Christian Thomas Sharon Blomme Ms. Valerie Barnes Frank J. Mairano Evelyn and Glenn Jollimore Andrew Patitucci Jacqueline Hudson Maureen and Paul Schuler Kristen Huizdos Nancy Tossona John Stone Christopher Langolf Cobi and Christopher McLeod Melissa and Jack Doebley Frank L. Teixeira Kirstie and Andrew Almy Anjuli Roy Mary and Lee Langolf James and Carolyn Mulkerrin Carol Carney Urbi Ghosh and Hemant Roy Jonathan Swanson Cole Simsarian Susan Cassidy Mary Ann Blaska Elizabeth Cruz Mr. Thomas Rodgers Annie Beaumont Peggy Hauck Julia and Peter Swanson Grant Hutton Laura Berman Sharon and Frederick Brill Janet Nigosanti Dorothy Maki Lucy and Gary Lahood Jordan Hodge Marylou and Robert Sleek Anya Janoski Connor M. Feehan New Creation UCC Gregg N. Abbott Dawn and Michael Rice Beth Stern Thomas Lee Jim and Jan Abbott Sharon Kroon Josef Neu Mildred and Charles Wollborg Aubrey Garigen Conrad Clemens ClearView Healthcare Partners Gretchen E. Heinrich Patricia Feighan Jackie Biddle Liselotte Davis Ellen and Daniel Smock Cherie Williamson Julie Champion Michael Feighan Austin J. Staggs Dena Borgia Shannon and Thomas Noonan Gracie Fry Carla Vollmer Kortni Knight Arleen Semegen Ms. Winifred Connor Margaret Frederick Kathryn and Alan Lindstrom Kimberly and Mason Knechtle Corinthia and Paul Greenway Judith Diebolt Staggs Construction, Inc. Devin Miller Kaitlyn A. Kuepferle Lynnette and Dean Miller Donna and Sean Confer David Eberle Linda Chatham Hunter Barrett Benjamin Miller Helen Miller Susan and William Bass Gary Hartman Robin Rygiel Muriel and William Walters Katherina Nikzad-Terhune Jon and Katherina Terhune Halston Dorow Iselen Rosvik Blade Klatt Devon Webster Victor Morris Kari Cunningham-Rosvik and Joan and Elmer Geissler Carol and Samuel Griffith Katherine E. Luyt Geir Rosvik Lynette and Clifford LePiane Hannah Boehman Brandt Anderson Devonne Wilson Sara and Michael Boehman Jake A. Marcus Fran and Wayne Shull Georgia and James Riley Katherine L. Harvey Jessica and Frank Pulio Alberto Alvarado Hannah E. Moore The Cavaliere Family Brendan Rees Doug K. Clemens Patricia and Brian Moore Helen Thompson Joanne Kennard Kathryn E. Woodruff Jarod R. Carman Elizabeth and Andrew Harley A. Butler Margaret and Richard Vannelle Feranchak Brian J. Drach Douglas R. Canning Mrs. Mary Jane Fenske Virginia and John Ehlen Ann Moore Jeffrey Woodall Mary and Patrick Canning Kathy Van Buren Henry P. McKenna Tracey Woodall Susan and Raymond Carlton Brianne N. Prada Linda and Michael McKenna Denise Gelsimino Dustin Tolar Jenna LaRosa Mrs. Mary Ann Wesley Katie Giberson Beth and Mark Smisloff Lesa and Jeff Giberson

REACHING OUT 16 www.CdLSusa.org 302 West Main Street #100 Avon, CT 06001-3681 800.753.2357 • www.CdLSusa.org

Katie Rich Mason Linehan Barbara Hunger Samuel D. Miller Jason E. Hunter Julie and Roy Gonella Valerie and Jay Lienhard Bowser Center for Advanced Diane Miller Clarissa and Ebert Adams Dentistry Ann and Michael Swartz Deborah Heile Kelly M. Noyes Matthew E. Chevrette Bruce C. Dietterick, III, D.D.S., Susan and Michael Brown Brent and Katherine Friedman M.S., P.C. Jenny and Lawrence Noyes Ellen Cohen Siebert Farms, Inc A-C Service & Repair, Inc Sandra & Stuart Kaufman Scott Farwick York Endodontics P.C. Kelly S. Brown Maya Pomfret Lois Braverman Paul Weber, Inc. Susquehanna Oral Georgiana and Steven Jennifer Broman-Fulks Diane and Michael Friedman Katherine Heile Szydlowski CPR-Now, The First Conservation Bird Dog Club Meghan Eddy Joyce and Jim Kesting Response Team Sarah Suttmann Lecher’s Sawmill, Inc. Jim Kenney Dianne and Richard Haaland Michael Voegele Dottie and Rick Hoff Kristian L. Daly Richard Pomfret Anne and Mike Suttmann Ann and Frank Heile Michele Churchman Troy Remy Meta and Rick Palmer Jody Murphy Tricia and Jeff Williamson Laurie Churchman Mary Beth Lavender Lisa and Ronald Fitzpatrick Mollie and Dennis Smith Laura N. Dupuis Debra and Thomas Zipfel Victoria and John Roelker Beta Sigma Phi Sorority Theta Mikayla Needlman Jill Dupuis Kathaleen and Robert Patierno Megan and Dustin Walke NU Chapter 6293 Judith and Steven Masur Laura Merlini Deborah Heile Pixie and Jack Smith Frances and Irving Wein Lauren Krulish Jane and Brian Bercher Ellen and Thomas Heile Earth Worx, LLC David Kahn Susan Nickell Tracey and Tyler Forrest Gayle Witye Amy and David Fledderman Julie D. Goldstein Donna Fallon Angela and Sean Brown Lisa and Ronald Fitzpatrick Rona Bezman Lauren M. Lewin Nedra and Matthew Adelizzi Tonya and Todd Dickman Derek Suits Daniel Kaplan Irene and Bill Norris Christine Schmidt Anne and Mike Suttmann Christina and Todd Siebert Sol Lewin Darleen and Eugene Fritz Sharon Heile Ellen and Thomas Heile Mike P. Feehan Jessica Sturm Jerrod Gray Margaret and Larry Bergman KPMG LLP Leah Michaud Alyssa Westmoreland Christina and Todd Siebert Audra and Jordan Garverick Susan Michaud Richard Haaland, Ph.D. Michelle and Nicholas Biltz Stacey and John Prewitt Molly Wagner Roger and Ruth Mills Rebecca and Dwayne Jennifer and Dennis Lents Lindsay Franco Katherine and Ralph Felter Pam and Gary Nickless Hornberger 413 Properties LLC Melanie Horn Beverly and Gregory Thayer Sharon Heile Osterling Chimney Sweep LLC Rebecca Lee Nathan Frischmeyer Victoria and John Roelker Knights of St John - Comm Lindsey Fernandez Leslie Ehrhart Allen Stickfort Cinthia and Timothy Sams No 220 Jeffrey Arps Chang Roh and Myung Ja Roh Jill Weber Amy and Robert Buckley Penelope and James Pomfret Nathan Larsen Michelle and Nicholas Biltz Weihe Engineers, Inc. Logan Fowler Lauren Falvey Reta and Merwin Larsen Joyce and Gregory Moeller Susan and Ted Hahn Peter Weiss Dennis Cheek Derek Suits Aaron Lecher Construction Caroline Stuart Madeline White Nicole A. Miller Shannon and James Wells Gehring, Inc. Delaney and Peter Van Brunt Deborah and Galen Kessler Barbara Moquin Patricia Johnson Thomas Konnersman New York REIT Team Lisa Schoolcraft Eric J. Miller Tricia and Allen McPherson Friendship State Bank Collin Laffey Magic Carpet Pre-School Berna and Roy Meyer Batesville Inn, Inc. Sarah and Douglas Fleming Casie and David Hughes Paige C. Olson Chris and Colleen Werner Margaret Mary Health Barnorth Group LLC Margaret and Frank Defilippo Dawn and Steve Olson Claire and Joshua Werner Thomas J. Madl Jr. D.M.D. Joanne Snider Kaleidoscope Studios, LLC Deborah Heile Long Electric Company, Inc. Sydney and Emory Wishon Jason Bryan Peggy Peeler Samantha Walke Jill Weber Mary and John Cavalieri Tara Johnessee Christi and Tommy Peeler Beth and Mark Schutte Amber and Michael Lecher Lacey and Joshua Andrews Mrs. Shirley Suttmann Michele and James Hutchek Luca Borgia Erin and Frank Carcioppolo Philip Braverman Deann and James Brewer Brian Lindblom Arleen Semegen Tammy and Graham Carroll Lois Braverman Chris Grote Services LLC Jason E. Hunter Francesca and Karl Rissland Sue Bunselmeier Angela and Sean Brown Manuel J. Garcia Kathryn Bane Rebecca Davis Debra and Louis Hatke Marvin Voegele Eileen and Brian O’Rourke Erin and Paul Johnson Nancy and Stephen Bernard Angela and Sean Brown Jean and Michael Bossert Mary and David Stewart Christina and Bernard Heile Vincente Panizo Marc Needlman Kathleen Lorelli Riley A. Rissland Cassie and Jason Heile The Columbus Foundation Lucy Meepos Norma and George Hull Kimberly Wolf Rita and Randall Bartelt Marie Clark Phyllis and Joel Needlman Janice and Eric Duff Cassie and Jason Heile Margaret Smith Dorothy and Vance Eppley Robert E. Brough Timothy J. Sweeney Mary Fiori Jennifer Di Meo Barbara Brough Lisa and Ronald Fitzpatrick Shaylin H. Cubeta Carolyn and Ted Williams ATL Computer Support, LLC Katherine Heile Alice Hoke Christopher Clark Abby and Michael Gesell

1.800.753.2357 17 First Quarter 2017 302 West Main Street #100 Avon, CT 06001-3681 800.753.2357 • www.CdLSusa.org

Siena M. Renteria Alison M. Wells Scott Anderson Copher-Fesler-May Tyran King Mary Micallef Barbara and Norm Winnerman Susan and William Bass Funeral Home United Methodist Women Trish and Andrew Roser Debbie and Charlie Mills Vicki Stanford Francie Barber and Allan Seifried Caitlin S. Alicata Diane and John Schultz Vickie and Brian Miller Craig Cheney Kathy and Gene Van Buren Lisa and Thomas Alicata Diane Behrens Vickie and Gary Miller Eileen Ahearn and Mark Kliewer Whetsel Funeral Service Sofia Teixeira Allison Tryba Camille Rodriguez Enos Mullet Valerie and John Schlapp Jan and Les Tryba Clara and Rob Rodriguez Gregory Fisher Dallas C. Corbett Karen and Harry Fischer Harriett Turner Angelique Meyer Sydney Hoffman Karen and Rick Kristopeit Catherine Smith Hartley Funeral Homes Betty Maynard Debi Marks Lois and Richard Meyer Mary Opitz and Brian Luyt Henrietta and Harry Herron Board & Staff of the Heather Stemple Marcia and Tom Kiepczynski Holly and Mike Smith CdLS Foundation Susan and Lyle Tryba Cathie Canning Jeannine Terhune Dr. and Mrs. J. William Eakins Tamara Pfalzgraf Tori Stephens Ann McCarthy Joanne and Ernest Pape Emily Simpson Steven C. Gordon Family Candis and Don MacDuffie Joyce and Jim Kesting Kourtney Hartley Foundation Amanda Liby Denise and Clifton Peasley Julie and Roy Gonella Michel and Adam Connolly Board & Staff of the John R. Formica, Jr. Karen and Clayton Parkison Ms. Yvonne Corbett Tara Kimmel CdLS Foundation Judith and Joseph Cianciolo Karen and James Roudebush Susan and Sabato Parisi Carey and Brook Sipe Karyn Ward Karen Finnigan Susan Kutzleb Andrew J. Schwalbe Laura and Tom Amidon Karolyn and Michael Schmitt Taylor Nelson Scott Appleton Linda Overton Kathryn and Peter Wagner Dan Sheehan Steven Street Maria and Maury Paslick Kiyomi Andrada Kathy and Gene Van Buren Andrew Kane Mark Flaherty Laura and Anthony Gilliam Thomas Russo Karen Manzo Michael and Ann Bohac Leah and Roger Renbarger Daniel Krimpenfort Tracey and Thomas Russo Mr. and Mrs. R.K. Groudis Leigh and Steven Holloway Jo Ann and Robert Hanekamp Annie Parr Nancy and Ejner Johnson Loose Funeral Homes & Mary and Jim Krimpenfort Tristen Black Crematory Clarissa and John Sweeney Roy Menard Ginger McClellan-Swope Lori and Gilbert Andrada Darlene Hill Lynda and Stephen Clark Austin O. Erdman Charles J. Parker Board & Staff of the Tyler Macy Lynnette and Dean Miller CdLS Foundation Pamela and Gary Erdman Carol and Charles Parker Barbara and Timothy Macy Madison County Funeral Claire Simmons Director Association David Lindholm Bob Leeds Claudia R. Tiongson Mary Jo and Ken Swenson George R. Lindholm, M.D. Patty and Vince Buccilli Dolores and Robert Schoen Vito Cappiello Mary Levis Michael and Kathy Keller Diane & Michael Friedman Brenda J. Heltne Dee A. Frazier Clayton and Ruth Van Buren Michael Green Jean and Dennis Eich Mary Neidenbach Kathy and Gene Van Buren Michele and Roger Wilkins Wesley Truslow Tracie and Gregory Maloney Particia Hofmann Mikella and Stephen Lowe Edward Risner Conrad A. Hersberger Minda Lees Brian Leung Karen and Larry Prada Alexandria Memorial Myrna and James Davis William E. Smisloff Kai Leung Services Inc Nancy and George Likens Elaine and Thomas Whalen Amanda and John Everitt Emery R. Vinson Nancy and Neal Brown Larry Jordan Brian Lynch Amanda Ridgeway Norma James Nancy and Peter Bixler Board & Staff of the Anne and Mike Suttmann Nancy Wise William Messer CdLS Foundation Ardyce and Alfred Behrens Emily K. Johnson Pamela and Christopher Jones Linda and James Harris Barbara and Larry Hall Murray Johnson Patti and Meghan Hersberger Pat and Eddie Roncales Bruce Fry Barbara and Norm Winnerman James and Elizabeth Johnson Penny Smith Angela and Arthur Williams Barbara and Ronald Childers Perkinsville Community Church In Memory Cathy and Louis Tankersley Barbara L. Hall Ethan Walters Phyllis and Paul Hersberger Corinthia and Paul Greenway Barbara White Penelope Keating Rhonda and Robert Fields Abby D. French Dana and James Jennessee Betty Duganich Candace & Shane Kelly Ruth and Willis Anderson Norma James Donna and Sean Confer Board & Staff of the Doris Goodwin CdLS Foundation Shelaine Neely Ethel Seifried Adam Hasecke Jane Frain Bonnie and Danny Barmes Sherri and Carl Schildtknecht Kathy and Gene Van Buren Martha Robertson Leslie and Mills Polatty Bonnie and Truman Miller Sherry and Jeff Risk Linda Chatham Carol and Kirk Cochran Sherry Bixler Frank Colosi Alex. Black Linda Fry Carolyn and Bob Wilson Susan and Rusty Bodenhorn Robyn Rothman Alana and Rob Donald Lisa and Kevan Smith Cindy and Michael Graham Terri Rinker Margaret Frederick Connie Sears Thelma and Hobert Ridings Thomas Monument

REACHING OUT 18 www.CdLSusa.org 302 West Main Street #100 Avon, CT 06001-3681 800.753.2357 • www.CdLSusa.org

Glorianna Gibbon Kimberly Welborn Paul A. Pietrafesa Richard Veal Marilyn Trent Grace Ann Murphy Noveta Larson Ann and Lee Johns Norma James Mary Ann Blaska Mr. Thomas E. Addy, Jr. Anne and Mike Suttmann Marylou and Robert Sleek Kourtenay Tharp Linda and Jim Biancarosa Robert J. Capenegro Maureen Feighan-Kurth and Hilary A. Stokes Leslie and Bruce Tharp Carol and John Cataline Joel Kurth Linda and Joel Stokes Paula J. Hauffe Michael Feighan Howard Seifried Layla A. Carr Ann Reise Robert O’Brien Michael Reeber Kathy and Gene Van Buren Kristy Holt Jeanne and Henry Erke Dianne Shrum Mildred and Charles Wollborg Marilyn Jones Mr. Thomas Rodgers Jacquelyn Snyder LeAnn Crooks Norma James Ryan M. Barthel Mrs. C. Cole Georgia Hauffe Connie and Scott Kelton Donna and Richard Mifsud Patricia Feighan Kathy and Gene Van Buren Geoffrey Russell Rachel E. McCoige Sharon Blomme Marilyn Jones Loren Cook Company Mr. and Mrs. Chad McCoige Stephanie S. Smith Sharon Kroon Ms. Janet Crooks Crystal and Jerry Smith Sondra Doran James F. McKinley Sonia and Jon Moran Randall Hoglund Suzanne and Jess Soltess Ronald McKinley Board & Staff of the Sylvia Parr Liddy Horsey CdLS Foundation Clarissa and John Sweeney James J. Fenske Karen Manning Cindy Duty Mrs. Mary Jane Fenske Mary and Robert Geis John and Mary McFarland Tara M. Joyce Mary Manning Ruth McQuaide Mrs. Patricia Joyce Jarryd D. Fierro Patricia Horsey Felicia Ostdiek Vicki and Brad Haneberg Raymond E. Potts Thomas Jeambon Elizabeth and Kevin Poplawski Judy McClain Jasmine M. Querubin Madelyn M. Jackson Norma James Jill Boettger Regan Lee Tyrone Beaty Norma James Board & Staff of the Jason D. Shufelt Marilynn Welborn CdLS Foundation Norma James Margaret and George Laubach Renee Santia Noveta Larson Zelma Ono Vera Condon Jayden Vera Leslie and Bruce Tharp Norma James Michael Gonella Richard Bretthauer Andrea and Steve Miller Angela and Craig Strouse Vincent Field Jenna Kraemer Donna and Norman Gleit Barbara and Richard Robey Caroline and Jim Saklad Norma James Philip Schneider Denise and Brian Langan Mary Opitz and Brian Luyt Sandra and Clyde Lapish Susan and Raymond Molinari Donna Cochems Nancy Sheheen Glori Sabin

Jeremiah Caudillo Michael Shortill Jacqueline and Michael Will Henry Kurth Caravello Barbara and James Galyean Lynne Kerr and Hunter Jackson Anita Kurth Janet and Barry Benson Mary Opitz and Brian Luyt Benjamin Bloome Kathleen and Mario Gobel Jindi H. Van Buren Wendy and Andrew Miller Carla Vollmer Majorie Lund Jo Ann and Charles Hessinger Carol Bloome Mary and Dennis Pauli Kathy and Gene Van Buren Nancy Kuepferle Carol Carney Maureen Fox-Rusch Marilyn Eberle Cherie Williamson Randi and David Friend Joseph F. Haaland Claudina and Anthony Scalise School District Of Edgerton Marietta and Federico Dancel Natalie S. Nikzad Cobi and Christopher McLeod Todd Wiedenfeld Claudia Terhune Dawn and Michael Rice Joshua D. Ackles Marion Leonard Elizabeth and Robert Konnik Richard H. Bergstrom Barry and Julie Pugh Evelyn and Glenn Jollimore Bonnie Warnecke Nikolas L. Dallas Jessica Botts Dianne and Charles Lessa Kamren L. Dennis Greg and Petra Dallas Joseph and Sheila Howse Janet and William Goman Norma James Judith Diebolt Joyce and Jim Kesting Nola Ricci Julia and Peter Swanson Lois and Daniel Lawler Ken Parsons Norma James Kathleen and Paul Huizdos Lynne Kerr and Hunter Jackson Lynn Saal Kirstie and Andrew Almy Mary Clear Nylah Cherry Kristen Huizdos Mary Opitz and Brian Luyt Kerry Myrthel Norma James Laura and Michael Smith Michael Glick Willing Workers of Laura Berman Paradise Valley Wendy and Andrew Miller Lucy and Gary Lahood

1.800.753.2357 19 First Quarter 2017 Cornelia de Lange Syndrome Foundation, Inc. NON-PROFIT 302 West Main Street, #100 U.S. POSTAGE Avon, Connecticut, USA 06001 PAID HARTFORD, CT Return Service Requested PERMIT NO. 751

2016 CdLS Family Map CdLS Family Map

Below is a map of the number77 of families we are in contact with from each state, as of December 2016. WA NH 32 2016 CdLS Family Map VT 12 15 7 ME 21 AK 5 MT ND OR 41 MN 75 MA 89 WI 67 ID 24 SD 7 NY 187 WY 12 MI 95 RI 17 WA 77 CT 50 31 NH 32 IA PA 154 NE 29 VT 12 15 7 MENJ 21 101 AK 5 NV 25 MT ND OH 146 IL 115 UT 37 IN 76 DE 7 OR 41 MN 75 DC 4 CO 55 26 MD 56MA 89 CA 309 MO 64 67 WV 92 ID 24 7 KS 39 WI VA SD KY 43 187 7 NY HI WY 12 95 17 MI NC 106 RI 65 CT 50 IA 31 TN OK 42 PA 154 AZ 65 25 NE 29 35 SC 33 101 NV 25 NM AR OH 146 NJ IL 115 UT 37 IN 76 DE 7 AL 56 GA 83 DC 4 CO 55 MS 24 CA 309 64 WV 26 MD 56 KS 39 MO VA 92 TX 272 KY 43 HI 7 LA 63 NC 106 TN 65 13 65 OK 42 PR AZ NM 25 AR 35 SC 33 FL 177 Northeast 56 83 MS 24 AL GA

Southeast TX 272 LA 63 Midwest PR 13 FL 177 Southwest Northeast

West Southeast

Midwest

Southwest

West