cdlsusa.org

Cornelia de Lange Syndrome (CdLS) Foundation, Inc.

The Cornelia de Lange Syndrome (CdLS) Foundation is a family support organization that exists to ensure early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS make informed decisions throughout their lives. The CdLS Foundation is a national non-profit organization that has served people with CdLS and their families since 1981. The Foundation's mission is reflected in its slogan: Reaching Out, Providing Help, and Giv

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Cornelia de Lange Syndrome Foundation, Inc.

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Cornelia de Lange Syndrome (CdLS) Foundation, Inc. | cdlsusa.org Reviews

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The Cornelia de Lange Syndrome (CdLS) Foundation is a family support organization that exists to ensure early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS make informed decisions throughout their lives. The CdLS Foundation is a national non-profit organization that has served people with CdLS and their families since 1981. The Foundation's mission is reflected in its slogan: Reaching Out, Providing Help, and Giv

<META> KEYWORDS

1 calendar

2 español

3 media room

4 shop

5 what is cdls

6 characteristics of cdls

7 treatment protocols

8 diagnosis of cdls

9 critical care information

10 cdls publications

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calendar,español,media room,shop,what is cdls,characteristics of cdls,treatment protocols,diagnosis of cdls,critical care information,cdls publications,ask the expert,frequently asked questions,who we are,our history,meet our staff,board of directors

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Cornelia de Lange Syndrome (CdLS) Foundation, Inc. | cdlsusa.org Reviews

https://cdlsusa.org

The Cornelia de Lange Syndrome (CdLS) Foundation is a family support organization that exists to ensure early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS make informed decisions throughout their lives. The CdLS Foundation is a national non-profit organization that has served people with CdLS and their families since 1981. The Foundation's mission is reflected in its slogan: Reaching Out, Providing Help, and Giv

SUBDOMAINS

pressroom.cdlsusa.org

The CdLS Press Room

CdLS in the News. Donate To CdLS Now. The Foundation is a leading news source for CdLS developments, events, commentary, and media coverage. We continually update the news-related content in order to keep you informed. Walgreens Teams Up with National Nonprofit Giving Support in MA and RI Stores. AVON, CT (Feb. 2, 2018) -. Walgreens stores across MA and RI have participated in a Scannable Event in support of the Cornelia de Lange Syndrome (CdLS) Foundation. After two weeks of fundraising,. Avon-based nat...

familyalbum.cdlsusa.org

The CdLS Family Album

See an Alphabetical List. Connect with a Family. Add your Child to the Album. Contact the CdLS Foundation. Connect with a Family. The CdLS Family Album. Thank you for visiting the CdLS Foundation’s Online Family Album, where families can share photos of their child along with their likes, dislikes and challenges. In the Comments section, provide the child's key code, which is listed at the bottom of his or her individual album page. You can also contact us at 800-753-2357. Page: 1 of 24.

donate.cdlsusa.org

Donate To CdLS Now | Cornelia de Lange Syndrome Foundation, Inc.

Donate Now ». Celebration and Memorial Gifts. Estate and Planned Giving. Stocks, Trusts and Other Gifts. 21st Century Conference Fund. The CdLS Foundation relies on the generosity of families, friends and the community for support. No gift is too small. All information entered into this form will be encrypted for secure transfer over the Internet. If you do not wish to make an online donation at this time, you may call the Foundation at 1.800.753.2357, or you may return to the CdLS Homepage. I wish to re...

calendar.cdlsusa.org

The CdLS Foundation Calendar of Events

Whether you're looking for the next family gathering, a golf tournament, or just want to see what's going on in your region, the calendar of events has all the what, when and where you need. March 14, 2018. CdLS Clinic at Shriner's Hospital. Salt Lake City, Utah. March 18, 2018. United Airlines NYC Half Marathon. New York, NY. View event details ». April 7, 2018. Multidisciplinary Clinic for Adolescents and Adults. May 6, 2018. 2018 TD Five Boro Bike Tour. New York, NY. View event details ». May 21, 2018.

blog.cdlsusa.org

The CdLS Foundation Blog

CdLS in the News. Research News and Updates. The Foundation's blog informs families, doctors, friends and whoever else drops by, about CdLS and the Foundation. This blog serves as a pipeline for sharing Foundation news, research, updates, and details about upcoming CdLS events on a more current basis. Please note: It is not a place to discuss medical issues nor is it a support group forum. Get ready for Golf in MO. Entry Published On: September 21, 2017 9:26 PM - Comments: 0. Your "CdLS Family" Doctor.

asktheexpert.cdlsusa.org

Ask The Expert | Cornelia de Lange Syndrome (CdLS) Foundation, Inc.

Ask The CdLS Expert. Diarrhea: BRAT (Bananas, Rice, Applesauce, Toast) Diet for. Hearing - Flat Tympanograms. Información en Español. For parents, caregivers, health care providers, and teachers, concerns and questions often arise in regards to the care and well-being of individuals with CdLS. Is not a substitute for the care and attention your child's personal physician, psychologist, educational consultant, or social worker can deliver. Anesthesia for Undescended Testicles. Birth Control and Weight Gain.

storybank.cdlsusa.org

The CdLS Story Bank

Información en Español. Annual Report and Financials. Connect with a Family. Información en Español. CdLS Advocacy and Awareness. CdLS Centers for Excellence. Celebration and Memorial Gifts. Stocks, Trusts and Other Gifts. 21st Century Conference Fund. Connect with a Family. Dress Down for CdLS. Team CdLS 5k Club. Yard Sale Across America. View Story Bank Archives. Search for a Story. The CdLS Story Bank. Help build the CdLS Story Bank. Share your story today. Continue reading Austin Cole.

INTERNAL PAGES

cdlsusa.org

1

CdLS Información en Español | Cornelia de Lange Syndrome Foundation, Inc.

http://www.cdlsusa.org/what-is-cdls/cdls-en-espanol.htm

Información en Español. Annual Report and Financials. Connect with a Family. Información en Español. CdLS Advocacy and Awareness. CdLS Centers for Excellence. Celebration and Memorial Gifts. Stocks, Trusts and Other Gifts. 21st Century Conference Fund. Connect with a Family. Dress Down for CdLS. Team CdLS 5k Club. Yard Sale Across America. Información en Español ». Información en Español. In a move that takes its commitment to the Hispanic community to the next level, the CdLS Foundation is proud to anno...

2

Meet The CdLS Experts | Cornelia de Lange Syndrome Foundation, Inc.

http://www.cdlsusa.org/about-cdls-foundation/cdls-experts.htm

Información en Español. Annual Report and Financials. Connect with a Family. Información en Español. CdLS Advocacy and Awareness. CdLS Centers for Excellence. Celebration and Memorial Gifts. Stocks, Trusts and Other Gifts. 21st Century Conference Fund. Connect with a Family. Dress Down for CdLS. Team CdLS 5k Club. Yard Sale Across America. CdLS Experts ». Annual Report and Financials. And provide consultations at family gatherings/conferences. Robert Greenstein, M.D., Clinical Genetics. Arthur Lander, M&...

3

About The CdLS Foundation | Cornelia de Lange Syndrome Foundation, Inc.

http://www.cdlsusa.org/about-cdls-foundation/index.htm

Información en Español. Annual Report and Financials. Connect with a Family. Información en Español. CdLS Advocacy and Awareness. CdLS Centers for Excellence. Celebration and Memorial Gifts. Stocks, Trusts and Other Gifts. 21st Century Conference Fund. Connect with a Family. Dress Down for CdLS. Team CdLS 5k Club. Yard Sale Across America. Annual Report and Financials. About the CdLS Foundation. The Foundation is the only organization dedicated to CdLS in the nation. It distributes a number of public...

4

Strategic Planning | Cornelia de Lange Syndrome Foundation, Inc.

http://www.cdlsusa.org/about-cdls-foundation/strategic-planning.htm

Información en Español. Annual Report and Financials. Connect with a Family. Información en Español. CdLS Advocacy and Awareness. CdLS Centers for Excellence. Celebration and Memorial Gifts. Stocks, Trusts and Other Gifts. 21st Century Conference Fund. Connect with a Family. Dress Down for CdLS. Team CdLS 5k Club. Yard Sale Across America. Annual Report and Financials. Strategic Planning ». Strategic Goal 1: Improve awareness of the syndrome and the organization. Add/establish a regional multi-discipline...

5

Team CdLS | CdLS Highlighted Events | Cornelia de Lange Syndrome Foundation, Inc.

http://www.cdlsusa.org/events/team-cdls.htm

Información en Español. Annual Report and Financials. Connect with a Family. Información en Español. CdLS Advocacy and Awareness. CdLS Centers for Excellence. Celebration and Memorial Gifts. Stocks, Trusts and Other Gifts. 21st Century Conference Fund. Connect with a Family. Dress Down for CdLS. Team CdLS 5k Club. Yard Sale Across America. Highlighted Events ». Dress Down for CdLS. Team CdLS ». Yard Sale Across America. Running in an event not listed,. Skechers Performance Los Angeles Marathon. 2016 Team...

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lisaleonard.blogspot.com

it's the little things...: June 2008

http://lisaleonard.blogspot.com/2008_06_01_archive.html

Monday, June 30, 2008. Steve and i had a three night get-away to seattle over the weekend. our first time away from the boys for more than one night. I had planned to post while we were away, but the internet connection was too slow to upload pics. The weather got really warm over the weekend- up to about 100, but we still took it all in. we brunched at the space needle. Shopped around pike's place. Here we are at the top of the space needle. Yummy cookie, too! Friday, June 27, 2008. We've been working o...

lisaleonard.blogspot.com

it's the little things...: August 2008

http://lisaleonard.blogspot.com/2008_08_01_archive.html

Sunday, August 31, 2008. So what have i been reading? I just finished 'love walked in' by marisa de los santos which is a fun, sweet story about a thirty-something woman whose life changes in a beautiful way. Now i am reading 'nights of rain and stars' by maeve binchy. she wrote 'circle of friends' (remember that book/movie from about 12 years ago? It was minnie driver's first big role). it took me a while to get into it, but i've really enjoyed the story and the characters. Notice a trend here? David is...

pgbarnetts.blogspot.com

Fun With the Pleasant Grove Barnetts: Bridget Michele Barnett

http://pgbarnetts.blogspot.com/2009/07/bridget-michele-barnett.html

Fun With the Pleasant Grove Barnetts. Saturday, July 18, 2009. Bridget arrived on July 16th, 2009 at Mountain View Hospital in Payson (long story) via scheduled C-Section. She weighed 6lbs, 12oz and was 21 inches! But for now, I wanted to give everyone this info and a couple of pictures. My favorite picture of Bridget is at http:/ www.hospitalportraits.com/. Just click her name to see that one. Here are a few we took. I will blog again after we settle in at home tomorrow! Still gooey, but composed. My wo...

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Maria's Homecoming: Maria has another diagnosis

http://www.mariashomecoming.com/2010/03/maria-has-another-diagnosis.html

Saturday, March 6, 2010. Maria has another diagnosis. We appreciate your prayers for Maria. Please pray that she will stop hurting herself. Also please pray that if she does have any physical issues wrong (i.e. GI issues, etc.) that the doctors will find them as soon as possible. We often feel that she is in pain, but have no idea if she is. Thank you all for your love and concern for our family. We praise the Lord for you. March 7, 2010 at 12:11 PM. Much luck in your doctors appointments. I imagine ...

lisaleonard.blogspot.com

it's the little things...: Chapter two, Labor and Delivery

http://lisaleonard.blogspot.com/2007/04/chapter-two-labor-and-delivery.html

Thursday, April 26, 2007. Chapter two, Labor and Delivery. Early the next morning they began the inducement process. First they start with a topical gel. That didn't do anything, so a few hours later they started a pitocin drip through my IV. The day went very slowly. There was a heaviness in the air. So many close friends and family were there. We felt very loved and supported, in the midst of the emotional strain. I looked her straight in the eye and took a bite. I wasn't in a mood to mess around.

lisaleonard.blogspot.com

it's the little things...: May 2008

http://lisaleonard.blogspot.com/2008_05_01_archive.html

Saturday, May 31, 2008. Friday, May 30, 2008. Father's day is coming. Thursday, May 29, 2008. AKA set the pins up before David knocks them down! We have a long hallway between the living room and bedrooms that is just perfect for a little bowling alley. We picked up this set of plastic pins at Target. Have I ever mentioned how much I love Target? Wednesday, May 28, 2008. My boys got me a nikon D40 this year. wow! David having fun with daddy. good times! Silly david. sometimes breakfast is so funny! Longs...

lisaleonard.blogspot.com

it's the little things...: March 2008

http://lisaleonard.blogspot.com/2008_03_01_archive.html

Sunday, March 30, 2008. Featured design for april and giveaway. Since last month's design was such a hit, i decided to stay in the same vein. Two hammered squares (About 1/2" each) are hung from a thick, sterling ring and strung on 18" sterling chain. A cream freshwater pearl adds the perfect detail. Each square can fit up to 6 characters. Oh, it's so perfect! 4600, additional charms $14.00. SoI am giving one away. Leave us a comment and tell us something fun scheduled for April. Such a fun blog! If you ...

lisaleonard.blogspot.com

it's the little things...: July 2009

http://lisaleonard.blogspot.com/2009_07_01_archive.html

Thursday, July 16, 2009. At our new site lisaleonardonline.com. Subscribe to: Posts (Atom). Check out my hand-stamped jewelry! Featured Design for September. Sweet and Simple Bird Necklace. Easy ideas to connect with our kids. Of lisa leonard designs 2008. Central Coast, CA, United States. View my complete profile. Learn more about David. Chapter one, first signs of trouble. Chapter two, labor and delivery. Chapter three, time in the NICU. Chapter four, bringing David home. Chapter five, the clouds lift.

jcookclan.blogspot.com

The Cook Family: May 2009

http://jcookclan.blogspot.com/2009_05_01_archive.html

Saturday, May 30, 2009. Still at the Hospital. Jacob's oxygen needs are slowly getting under control. He is down to two liters (from four) and will hopefully be continuing to do better on his own. Audri has taken the 'night off' to spend some much needed rest at home with JD. She has spent the last week staying with Jacob at the hospital while I went to work and stayed with JD. Links to this post. Tuesday, May 26, 2009. 9 days in the hospital and counting. Links to this post. Tuesday, May 19, 2009. 24 - ...

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cdlsusa.org

Cornelia de Lange Syndrome (CdLS) Foundation, Inc.

Información en Español. Annual Report and Financials. Connect with a Family. Información en Español. CdLS Advocacy and Awareness. CdLS Centers for Excellence. Celebration and Memorial Gifts. Stocks, Trusts and Other Gifts. 21st Century Conference Fund. Connect with a Family. Dress Down for CdLS. Team CdLS 5k Club. Yard Sale Across America. We're Here for You. The CdLS Foundation staff is here to listen and help. Call 800.753.2357 Monday through Friday, 8:30 am to 5 pm, eastern time.

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Life with Jessica | Ramblings on raising a child with Cornelia de Lange Syndrome

Ramblings on raising a child with Cornelia de Lange Syndrome. A Bit About Jess. April 10, 2010. Change is the constant, the signal for rebirth, the egg of the phoenix”. Happy Saturday, happy Spring! Posted in SOOC Saturday. February 20, 2010. SOOC Saturday Hidden Worlds. 8220;To see a world in a grain of sand and heaven in a wild flower; hold infinity in the palm of your hand and eternity in an hour”. February 13, 2010. SOOC Saturday “X” Marks the Spot. PS – we are soooo tired of snow! October 8, 2009.

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The Williams Family Blog

The Williams Family Blog. Friday, September 4, 2009. Thursday, March 19, 2009. Spencer turns 6 months old. Wednesday, January 14, 2009. Christmas 08 and early 09. Dawn, Charlie, Logann and Spencer. Monday, December 22, 2008. Sunday, December 7, 2008. This past month was busy and fun. We finally got our first snow on Thanksgiving night. As you can see from the photos, Logann. Is quite the snow bunny. She turned 3 on the 11 th. Spencer now smiles, coos, says ah-goo and tolerates his sister. Logann's. Went ...