CyberBulletins

March 14, 2006

CdLS Foundation CyberBulletin -- Register Early for the CdLS Foundation's Conference and Save!

Register before March 24th and save on Conference registration fees!

Join us this June for a life-changing event! The CdLS Foundation’s National Conference is June 22nd – 25th at the Hilton Philadelphia/Cherry Hill, NJ.

Visit our conference website to see more information about Conference, print out the registration booklet if you have not received one in the mail, or watch the highlight video of the 2004 Conference. Scholarships are available on a first-come, first-served basis for first-time attending families.

Previous attendees have this to say about Conference:

“I encourage families to do whatever it takes to attend a conference. You’ll be so glad you did.”

“You will leave the conference with a sense of accomplishment that you and your family can truly make it in this world with that special child of yours, and that you are not alone, ever.”

“If I could say one thing to any family it would be this, ‘Yes, it is scary, exhilarating, fun, sad, and maybe a little expensive, (but) oh such a wealth of fellowship and knowledge. You’ll be glad you took the plunge.’ ”

~~~~~~~~~~~~~~~~~~~

Kalia Kellogg
Director of Communications
Cornelia de Lange Syndrome Foundation

August 19, 2005

The CdLS Foundation DVD/Video “FIND ONE CHILD” is now available!

Relatively few people have heard of Cornelia de Lange Syndrome, even fewer could identify a child with CdLS. As we learn that the occurrence rate of CdLS is greater than we previously believed, we turn to YOU for help.

We have created a new video presentation that highlights the characteristics of the syndrome and describes the services available through the CdLS Foundation. Interested families and professionals have requested copies to show in their schools, places of worship, and professional circles to educate their friends, colleagues, and community leaders about CdLS. Your willingness to increase awareness of this syndrome will ensure that no parent or child will face the challenges of CdLS alone.

You can make the difference in a life. Please call us at 1-800-753-2357 or email us at awareness@cdlsusa.org to request your FREE copy, or visit our website for more information.

~~~~~~~~~~~~~~~~~~~

Kalia Kellogg
Director of Communications
Cornelia de Lange Syndrome Foundation

May 5, 2005

Saturday, May 14th is Cornelia de Lange Syndrome (CdLS) Awareness Day!

Children with CdLS need your voice. There are approximately 10,000 children in the United States who live with CdLS but do not have a diagnosis. In fact, researchers believe that five out of every six children who have CdLS have not received the diagnosis! We need your help to find these children and offer them and their families critical information and support.

We have updated our website with tools to help you increase awareness in your community.

• Visit our website at http://www.cdlsusa.org to find inspirational ideas for CdLS Awareness Day activities.
• Visit our “Get Involved” page for practical advice and important links to help raise awareness throughout the year.
• Visit the CdLS Store. Our new CdLS golf shirt is available just in time for summer and is a perfect item to wear for awareness activities. Also available through the store is the book “Uncharted Journey, Unexpected Blessings,” a compilation of powerful essays from parents of children with CdLS. All proceeds from the CdLS Store support the activities, materials, and research that broaden our services to people who have CdLS.

If you would like to request CdLS Foundation materials (brochures, flyers, bookmarks, etc.) please contact awareness@cdlsusa.org or call 1-800-753-2357.

Help us celebrate CdLS Awareness Day. Reach out to find the children who need our support.

~~~~~~~~~~~~~~~~~~~

Kalia Kellogg
Director of Communications
Cornelia de Lange Syndrome Foundation

April 15, 2005

CdLS Foundation and Reader's Digest Team Up to Help Children with CdLS

The Cornelia de Lange Syndrome (CdLS) Foundation has partnered with Reader's Digest to offer you the opportunity to purchase your magazine subscriptions at a discount while helping children with CdLS!

Here is how you can help:

1. Purchase, renew, or extend your existing magazine subscriptions through our online store at: www.CdLSmags.com and receive up to 85% off newsstand price on a choice of more than 650 popular magazine titles. Reader's Digest will give 40% of every dollar you spend directly to the CdLS Foundation!
2. Enter the email addresses of your family and friends across the United States who may be interested in helping the CdLS Foundation raise funds. They'll receive an email on your behalf inviting them to buy, renew, or extend their magazine subscriptions online at the same savings. Again, the CdLS Foundation gets 40% of their purchase amount!
3. Access this store anytime, 24/7! To start, click: www.CdLSmags.com or look for the Reader's Digest link on the Foundation website, www.CdLSusa.org/give.

Please don't hesitate to visit this convenient online store and shop for your magazines at great prices. Your purchase will help the CdLS Foundation bring light, help, and hope to everyone touched by the syndrome.

Your support is warmly appreciated,

Darrell Cookman
Director of Individual Giving
Cornelia de Lange Syndrome Foundation

March 3, 2005

Building a Network of Support

Offering Information and a Crucial Link

Doctors, therapists, and educators shape our lives in countless ways. At the CdLS Foundation we continue to reach out to professionals providing them with vital information about CdLS. We also provide a much-needed link between families and knowledgeable professionals.

Thanks to the generosity of the American Legion Child Welfare Foundation we are able to mail a comprehensive information packet about CdLS as well as a year of issues of our newsletter "Reaching Out” to any interested professional. Many professionals who initially contact the Foundation to learn more about the syndrome become valuable resources for the families in their area. With your help we would like to continue to educate professionals and build our nationwide network of support.

If you know of a caring professional who would benefit from more information about CdLS or if you would like to recommend a professional that you work with as a resource for others, please reply to this email with the following information:

• Name of professional
• Her or his area of expertise
• Address, email, and phone number
• Her or his preference for contact (email, phone, or mail)
• Your name

(Optional)

• Your name
• Area of expertise
• Address, email, and phone number
• Preference for contact (email, phone, or mail)

If you are a doctor, therapist, or educator who does not currently receive “Reaching Out”, please reply to this email with the following information:

• Your name
• Area of expertise
• Address, email, and phone number
• Preference for contact (email, phone, or mail)

(Optional)

• Number of people with CdLS you have served
• Name(s) of people with CdLS you have served

Thank you for helping us find support for all who request it.

~~~~~~~~~~~~~~~~~~~~~~~

Kalia Kellogg
Director of Communications
Cornelia de Lange Syndrome Foundation

November 23, 2004

We Are Thankful For You!

At this Foundation, we measure our lives by the help and hope we give to each person with CdLS. We also believe that every person with CdLS is unique and each has a gift to share with the world. Your support of our mission helps us to Reach Out, Provide Help and Give Hope. During this time of thanking and giving, we are thankful that you continue to be part of our CdLS Family.

Thank you for choosing to support our mission. On behalf of everyone we serve, I send all of our best wishes for a healthy and happy Thanksgiving Day. - julie

~~~~~~~~~~~~~~~~~~~

Julie Mairano
Executive Director
Cornelia de Lange Syndrome Foundation

October 28, 2004

Watch highlights from the CdLS-USA Conference on our website!

Attending a conference can be a life-changing experience. Thanks to the generosity of Crane Productions, our website www.cdlsusa.org now features a short video which highlights what conference is all about – a true celebration of people with CdLS and those who care for them.

Enjoy!

You can also view details about the upcoming CdLS International Conference at: http://www.cdlsworld.org/international/index.shtml.

The CdLS-USA website includes links to high, medium, and low bandwidth versions of the Conference Highlight Video. Please select the size most appropriate for your internet connection. Please allow time for download. The video may play sporadically during download, but should play smoothly once the download is complete.

~~~~~~~~~~~~~~~~~~~

Kalia Kellogg
Director of Communications
Cornelia de Lange Syndrome Foundation

September 30, 2004

Educate Professionals with a CdLS Information Packet

As the end of September is upon us, we know that many children with CdLS are in new classrooms or working with new professionals through various programs. We receive calls everyday from families, doctors, teachers, nurses, therapists, and students, etc., who are providing service to a child with CdLS or doing a presentation about CdLS and would like to have more information. In an effort to educate professionals about CdLS, a comprehensive packet of information is available free-of-charge to anyone who is interested in learning more about the syndrome.

This packet includes a recent issue of Reaching Out, a copy of Facing the Challenge - A Guide to Cornelia de Lange Syndrome, the Foundation Awareness flyer and our two brochures, FACTS about CdLS and Remember Their Faces, Remember Our Name.

You can request a packet by calling Barbara at 1-800-753-2357 or emailing her at info@cdlsusa.org. Please include the names and specialties of all professionals for whom you are requesting a packet. Inform someone today about CdLS!

~~~~~~~~~~~~~~~~~~~

Kalia Kellogg
Director of Communications
Cornelia de Lange Syndrome Foundation

September 9, 2004

Autumn brings opportunities to give at your workplace:

Now that we have identified the gene that causes Cornelia de Lange Syndrome (CdLS), children with CdLS need your help more than ever.

Each fall, many people have the opportunity to support our mission through a United Way campaign, the Combined Federal Campaign (CFC #1556), Independent Charities of America, Children's Charities of America or other workplace giving programs. We hope that you will give through your workplace campaign and encourage your friends, family and co-workers to do the same.

To participate, you may need to "write in" the Cornelia de Lange Syndrome (CdLS) Foundation on your workplace giving application since many campaigns do not assign us a numerical code. If your campaign coordinator needs information about our organization, have the coordinator call me at: 800-223-8355 or email me at: giving@CdLSusa.org; or, you may request that I contact her/him.

We acknowledge all workplace donations personally. Please be sure to give your campaign permission to share your contact information with us so that we may thank you. I assure you that we never sell, trade, or in any way share your contact information with anyone without your expressed permission to do so.

There are more than 10,000 children within the U.S. living without this diagnosis and the benefits that our programs provide. Thank you for helping us find these children.

Sincerely,
Darrell Cookman
Director of Individual Giving
Cornelia de Lange Syndrome Foundation

July 29, 2004

Researchers invite families to participate in the following CdLS Foundation sponsored behavior study:

"Behavioral phenotype and predictors of maladaptive behaviors in Cornelia de Lange syndrome" under the leadership of Marco Grados, M.D., Assistant Professor, Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine.

This clinical project will look at behaviors and predictors of behaviors in fifty individuals with CdLS, ranging in age from 5 to 17 years, and their families, using a battery of standard psychiatric tests, by interview and by parent questionnaires.

This project was approved by the Johns Hopkins Medicine Institutional Review Board #04-04-30-17 for the period of 05/25/04-05/25/05.

If you would like to participate, please contact Colleen Landy by phone: 443-287-2291 or email: cland002@umaryland.edu. It is always the choice of the family whether or not to participate.

~~~~~~~~~~~~~~~~~~~

Kalia Kellogg
Director of Communications
Cornelia de Lange Syndrome Foundation

May 20, 2004

Researchers Identify the Gene that Causes CdLS!

A team led by Dr. Ian Krantz at The Children's Hospital of Philadelphia (CHOP) reported in Nature Genetics that they have identified a gene on chromosome 5 that causes Cornelia de Lange Syndrome (CdLS).

Among the anticipated benefits of this finding will be confirmation of diagnosis as well as greater interest of CdLS in the medical/scientific communities. News of this discovery will touch people with CdLS and those who care for them in many ways. This discovery is so new that there are many questions that cannot be answered at this time. Please visit our website www.CdLSusa.org for information including answers to many anticipated questions. We will continue to update our website as we learn more about this discovery. Our May/June issue of Reaching Out will also include in-depth articles regarding the history, science, and any new findings related to this discovery.

Congratulations to Ian Krantz, M.D. and his team at Children's Hospital of Philadelphia for the discovery of the gene which, when mutated, causes CdLS. Also, to Laird Jackson, M.D. for initiating research to find the gene and enabling Ian to do so. The Nature Genetics publication abstract can be viewed at the Nature Genetics website at www.nature.com/genetics/.

~~~~~~~~~~~~~~~~~~~

Kalia Kellogg
Director of Communications
Cornelia de Lange Syndrome Foundation

April 29, 2004

CdLS Awareness Day - Opportunities to Get Involved!

On May 8th, people across the nation will celebrate the 16th Annual Cornelia de Lange Syndrome Awareness Day. In honor of this special day, we have a new feature on our website www.cdlsusa.org describing ways anyone can be involved in raising awareness of CdLS throughout the year. Activities range from preparing an effective press release to circulating our awareness flyer (which can be printed from our website) to attending one of our many Foundation-sponsored events. Check out the Events Calendar at to find events near you.

~~~~~~~~~~~~~~~~~~~

Kalia Kellogg
Director of Communications
Cornelia de Lange Syndrome Foundation

February 27, 2004

Adolescents and Young Adults with CdLS are Invited to Attend Multidisciplinary Clinic

The upcoming Multidisciplinary Clinic for adolescents and young adults with CdLS will be held at the Greater Baltimore Medical Center in Baltimore, Maryland on Saturday, May 15, 2004 from 9 am to 3 pm. Dr. Antonie Kline, the medical director of the CdLS Foundation, organizes this comprehensive program that enables families to consult with numerous professionals during their one-day visit. The professionals on-hand typically include a pediatric gastroenterologist, pediatric ophthalmologist, dietician, pediatric dentist, child psychiatrist, and geneticists (pediatric, internal medicine, obstetrician-gynecologist), as well as various other subspecialists.

If you are interested in having your adolescent or young adult with CdLS see and be seen by this group, as well as interact with other families, please contact the family service coordinator, Bruce Cleinman. These Clinics are currently held twice a year and space is limited. This opportunity is limited to individuals who have not previously attended one of Dr. Kline's multidisciplinary clinics.

~~~~~~~~~~~~~~~~~~~

Kalia Kellogg
Director of Communications
Cornelia de Lange Syndrome Foundation

December 31, 2003

Welcoming in 2004 - A Pivotal Year for the CdLS Foundation

Happy New Year to all! Even as we begin a new year we have reason to celebrate exciting news for the CdLS Foundation!

We are pleased to announce that we have a newly-created publication available for families who are new to the CdLS Foundation or those whose child has just received a diagnosis of CdLS. Due to a generous grant from the American Legion Child Welfare Foundation, Inc. we were able to publish the "New Family Newsletter" which includes informative and supportive articles, a list of CdLS Foundation services and contacts, and a guide to other national resource groups. Please contact us immediately if you know of any family who could benefit from such a publication.

We are also pleased to announce that the Foundation has approved and will fund four research projects addressing clinical or research topics within the Cornelia de Lange Syndrome. Awards were given to the following proposals:

Behavioral Phenotype and Predictors of Maladaptive Behaviors in Cornelia de Lange Syndrome Principal Investigator: Marco Grados, M.D., M.P.H.
Research Site: Johns Hopkins University School of Medicine
Baltimore, MD.

Chromosomal Analysis of Cornelia de Lange Syndrome Patients by Comparative Genomic Hybridization Principal Investigator: Cheryl DeScipio, Ph.D.
Research Site: The Children's Hospital of Philadelphia
Philadelphia, PA.

Development of Prenatal Diagnostic Markers for Cornelia de Lange Syndrome Principal Investigator: Dinah Yaeger, M.S.
Research Site: The Children's Hospital of Philadelphia
Philadelphia, PA.

Is a Small Fiber Sensory Neuropathy Part of the Clinical Spectrum of Cornelia de Lange Syndrome? Principal Investigator: Carsten Bonnenmann, M.D.
Research Site: The Children's Hospital of Philadelphia
Philadelphia, PA.

Reports from all projects will be presented at the 22nd National CdLS Conference, June 24-27, 2004, in Oak Brook, Illinois.

We thank you for all the ways you have helped us reach out, provide help, and give hope to people with CdLS this year. We look forward to your continued support in 2004 as we work to ensure that all persons with CdLS have access to accurate information and quality care. Best wishes for a happy, healthy, and joyous new year.

~~~~~~~~~~~~~~~~~~~

Kalia Kellogg
Director of Communications
Cornelia de Lange Syndrome Foundation