Monday, October 29, 2012

CALL TO ACTION: Ask Your Senators to Support Senate Bill S.3396 for CDH Research


Sen. Sessions joined with Sen. Ben Cardin (D-MD) to introduce legislation this summer to raise public awareness of Congenital Diaphragmatic Hernia (CDH) and place a greater emphasis on medical research to diagnose and treat the disease. Sessions’... grandson, Jim Beau, is a CDH survivor:

"I am honored to introduce this bill today, and am grateful for Senator Cardin’s support. This is a critical issue and early detection and awareness make a dramatic impact in the survival rate. However, more research is needed and this legislation asks the National Institutes of Health to determine whether a greater emphasis can be placed on CDH research within its existing budget."
CHERUBS is so proud to be a part of this historic event, the first step to real help to save the lives of babies born with CDH. 
 
 
 
 
 
 
 
 
 
 
 
 
 
CALL TO ACTION:
 
On July 18, 2012 Senator Jefferson Sessions (R-AL) formally introduced the Congenital Diaphragmatic Hernia Research Bill, co-sponsored by Senator Benjamin Cardin (D-MD).


Please ask your Congressmen to support Senate Bill S.3396
  1. Download Letter (DOC or PDF format) to Send To Your Senator / Congressman. Instructions and mailing addresses included.
  2. Include The CDH Research Bill and a photo of your cherub
  3. Sign the CDH Research Bill petition and ask others to sign as well!
 
 
 
 
 
 

Wednesday, October 24, 2012

Member Quotes - Jessica Johnston

CHERUBS Helps Families of Babies Born with Congenital Diaphragmatic Hernia

"I found CHERUBS while sitting in a hospital room watching my then 5yr old son recover from surgery after one of the most stressful times in my life where I was completely alone. I had no idea what CDH was and didn't even realize how lucky we were that he went that long without any issues till after finding them. It's been 4 years now, and I love each and every one of the members there" - Jessica Johnston, mother of Dustin

http://www.cherubs-cdh.org/

Monday, October 22, 2012

Member Quotes - Gemma Van Rillaer

CHERUBS Helps Families of Babies Born with Congenital Diaphragmatic Hernia

"I found Cherubs one week after Eilidh received her diagnosis and rely on this charity for support and advice. All families support and love each other with a family love" - Gemma Van Rillaer, mother to Eilidh

http://www.cherubs-cdh.org/


Sunday, October 21, 2012

Member Quotes - Noel Wiliams

CHERUBS Helps Families of Babies Born with Congenital Diaphragmatic Hernia

"When my husband and I went in for our routine 20 week sonogram we learned that our sons heart was in the wrong place and many of his stomach organs were pushed up I to his chest cavity. My husband and I researched for more information on this horrific birth defect and what the best hospital would be to deliver. Aidan was born June 6, 2006 and passed away on June 18, 2006. It's wasn't until 4 years after we lost Aidan that I decided to seek support from people who would understand what I was going through. Because of Cherubs I have found closure and I have had the honor of being able to call these people my friends. I would be lost without Cherubs" - Noel Williams, mom to Aidan

http://www.cherubs-cdh.org/



Saturday, October 20, 2012

Member Quotes - Sarah Deskins

CHERUBS Helps Families of Babies Born with Congenital Diaphragmatic Hernia

"I found CHERUBS the week after Jeremiah died from his CDH complications at home. Untill that point I did not know anyone else with a CDH baby, didn't even meet one in our 93 days in the NICU. All I knew was that according to the staff, I had the sickest baby in the unit. After finding CHERUBS and getting to know people on the message boards, I found other moms right here in Central Ohio with CDH kids. It felt great to meet someone face to face who didn't look at me like I had two heads when I mentioned that I had a son who passed away from Congenital Diaphraqgmatic Hernia. I just wish I'd found CHERUBS during my pregnancy" - Sarah Deskins, mother to Jeremiah
http://www.cherubs-cdh.org/


Friday, October 19, 2012

Member Quotes - Shelly Moore & Alicia Gilbert

CHERUBS Helps Families of Babies Born with Congenital Diaphragmatic Hernia

"When our Jayden was diagnosed with CDH we looked all over for support and found CHERUBS just before delivery. Although we had great family support there was so much they could not relate to that our CHERUBS family could. When we lost Jayden to CDH they again stepped up to the plate with comfort & support that you could feel across the miles. We are proud to part such a great group of folks and are looking forward to many more years supporting this GREAT organization!" - Shelly Moore, grandmother, and Alicia Gilbert, mother to Jayden


http://www.cherubs-cdh.org/




Thursday, October 18, 2012

Member Quotes - Cara Stevenson

CHERUBS Helps Families of Babies Born with Congenital Diaphragmatic Hernia

"I had noone at the beginning to talk to, we travelled the CDH Journey alone for a long time as, all I knew was what the Doctors told us.  3 years after Daisy passed away I stumbled across CHERUBS, it was my saving grace, at last I had people I could talk to about Daisy's year long CDH journey and at last I could start to grieve and make sense of what had happened to our beautiful girl.  I will be for ever thankful for CHERUBS and the ongoing support and help they have given me, and the friendships made" - Cara Stevenson, mother to Daisy

http://www.cherubs-cdh.org/


Wednesday, October 17, 2012

Member Quotes - Karen Myers

CHERUBS Helps Families of Babies Born with Congenital Diaphragmatic Hernia

"‎10 years ago when given the diagnosis that our unborn daughter, Kaleigh, was going to be born with a Congenital Diaphragmatic Hernia (CDH) my husband and I felt utterly helpless. Thankfully I found CHERUBS while searching the internet for anything and everything about CDH. They became my support system and got me through the roughest of days, especially after Kaleigh passed away at 17 days old due to CDH. They are still my support system and despite the little funding they receive from donations I always know that someone will be there to pick me up on the worst of days" - Karen Myers, mother to Kaleigh

http://www.cherubs-cdh.org/


Tuesday, October 16, 2012

Member Quotes - DeAnn McGilberry

CHERUBS Helps Families of Babies Born with Congenital Diaphragmatic Hernia

My mother found CHERUBS when I was pregnant with my 1st son Claude, he passed away at 10 days old. They were a great support system during this time. Little did I know that almost 5 years later I would need them again when my 3rd child Celie was born with CDH. Celie is 5 now and I am so lucky to have such a awesome group of moms and dads to share this journey with. All the good CHERUBS does to bring awareness to this little known birth defect as well as advocating for research leaves me with hope that my children will never have to go through what we did as parents when they decide to have children. Pictured above is Lil Claude and then Celie now at 5 yrs old" - DeAnn McGilberry

http://www.cherubs-cdh.org/





Monday, October 15, 2012

50/50 CDH Research Raffle Ticket Sales Contest Winners!



TICKETS ARE STILL ON SALE UNTIL OCTOBER 19th! PURCHASE TICKETS at http://cdhraffle.eventbrite.com/
 



  • 750 tickets have been sold so far.
  • Our goal is to sell a minimum of 1000 tickets.


  • All summer and up until October 12th we held a contest to see who could sell the most tickets for the CDH Raffle for CDH Research!  Drumroll please.... the winners are:


    First Place - DeAnn McGilberry, selling 72 tickets so far (she's still selling!)
    4 tickets to the 2012 Masquerading Angels Ball (valued at $400)

    Second Place - Jolin Eckman-Splees, selling 62 tickets!
    2 tickets to the 2012 Masquerading Angels Ball (valued at $200).

    Third Place - Theresa Erazmus, selling 61 tickets!
    2 tickets to the 2012 Masquerading Angels Ball (valued at $200).

    Fourth Place - Tara Hall, selling 60 tickets!
    1 CDH Awareness T-shirt and 5 CDH Awareness Bracelets

    Fifth Place - Karen Myers, selling 33 tickets!
    1 CDH Awareness T-shirt and 5 CDH Awareness Bracelets

    Sixth Place - Freedom Green, selling 32 tickets!
    1 CDH Awareness T-shirt and 5 CDH Awareness Bracelets

    Seventh Place - Neil Rubenstein and Michele Snyder, tied with 30 tickets!
    1 CDH Awareness T-shirt and 5 CDH Awareness Bracelets (both will recieve each)

    Eighth Place - Amanda Klein, selling 26 tickets!
    1 CDH Awareness T-shirt and 5 CDH Awareness Bracelets

    Ninth Place - Alicia Hoffman Guzowski, selling 23 tickets!
    1 CDH Awareness T-shirt and 5 CDH Awareness Bracelets

    Tenth Place - Ashley Barry, selling 21 tickets!
    1 CDH Awareness T-shirt and 5 CDH Awareness Bracelets

    The STATE that sells the most tickets collectively will win a pizza party get-together (valued at $200).  That winner is
    1. NC  - 130 (NOT including office ticket sales)
    2. FL - 102
    3. AL - 79
    4. OH - 60
    5. MD - 47
    6. CO - 39
    7. MI - 37
    8. TX - 31
    9. IL - 30
    10. CT - 26



    BUT IT'S NOT OVER YET!!!!!!!!!!!! 

    We are so close to selling all 1000 tickets that we will continue this with another contest... the person who sells the most tickets overall will get an Adopt A Hospital Kit donated to the hospital of their choice in honor/memory of their cherub!

    DEADLINE IS OCTOBER 19th!!!!

    THANK YOU to the following amazing people who sold, and are continuing to sell, tickets to help fund Congenital Diaphragmatic Hernia Research (tickets received as of October 15th):




    ·         Alicia Hoffman Guzowski

    ·         Amanda Klein

    ·         Amanda Gentry

    ·         Angela Knight

    ·         Ann Burns

    ·         Ashley Barry

    ·         Bonnie Leigh

    ·         Brian Fields

    ·         Candie Knott

    ·         Carrie Kime

    ·         Casey Carter

    ·         Christina Stembler

    ·         Darlene Silverman

    ·         Dawn Williamson

    ·         deAnn McGilberry

    ·         Debbie Redfield

    ·         Ellen Joyce

    ·         Facebook Page

    ·         Freedom Green

    ·         Freedom Green

    ·         Freedom Green

    ·         Freedom Green

    ·         Freedom Green

    ·         Freedom Green

    ·         Geanna Johnson 

    ·         Heidi Pehrson

    ·         Jade Hunt

    ·         Jennifer Rodi

    ·         Jennifer Martin

    ·         Jessica  Schmaltz

    ·         Joanna Daughtry

    ·         Jolin Eckman-Splees

    ·         Kacy Hurley

    ·         Kara Gleeson

    ·         Karen Myers

    ·         Karla Holt

    ·         Karol Napers

    ·         Kate Golden

    ·         Kenneth Cain

    ·         Kristin Garcia 

    ·         Kullen Denegri

    ·        Lisa Thibeau
    ·         Marsha Anita Custodio

    ·         Melissa Larrison

    ·         Michael Reid

    ·         Michele Snyder

    ·         Neil Rubenstein

    ·         Nicolle Colvin

    ·         No answer

    ·         Patricia Houle

    ·         Rachel Bonistalli

    ·         Rose Luna

    ·         Sarah Winborn-Moore

    ·         Shanon Chester

    ·         Shelly Moore

    ·         Stacey Richardson

    ·         Suzanne Borgen

    ·         Tara Zoitos

    ·         Tara Labozetta

    ·         Tara Hall

    ·         Theresa Heist

    ·         Theresa Erazmus

    ·         Tina Ingham

    ·         Tracy Meats

    ·         Vicki Salter

    ·         Vicki Collins


    TICKETS ARE STILL ON SALE UNTIL OCTOBER 19th!  PURCHASE TICKETS at http://cdhraffle.eventbrite.com/
    • 750 tickets have been sold so far.
    • Our goal is to sell a minimum of 1000 tickets.
    .
    The Drawing

    The raffle drawing will take place on October 20th live at the CHERUBS Masquerading Angels Ball. It will be videotaped or skyped and posted via our Facebook page.

    .
    The Prize Money

    The winner will receive 50% of total sales of the raffle tickets. Our goal is to sell 1000 tickets, which would equal to a $10,000 prize. If we sell under or over that number of tickets, the winner will still receive 50% of total sales of the raffle tickets - no more and no less.

    .
    CDH Research

    The remaining 50% of the total sales of the raffle ticket will go into CHERUBS CDH Research Fund. Our goal is to award another $10,000 grant at the 2012 Masquerading Angels Ball. Last year we awarded $10,000 to the Massachusetts General Hospital CDH Genetic Clinic.
     

    Our Organization:

    CHERUBS is a 501(c)III organization located in North Carolina. CHERUBS serves families of children and adults born with Congenital Diaphragmatic Hernia (CDH). As of April 2008, we have over 2250 members in all 50 states and 33 countries. Our Board Members include the founding father of in-utero surgery, genetic counselors, epidemiologists, pediatric surgeons and parents of children born with CDH. We are a volunteer-run organization and a United States Internal Revenue Service recognized 501(c)III Non-Profit Organization.

    http://www.cdhsupport.org

    PURCHASE TICKETS at http://cdhraffle.eventbrite.com/

    Member Quotes - Melissa Larrison

    CHERUBS Helps Families of Babies Born with Congenital Diaphragmatic Hernia

    "I found Cherubs after my 20 week ultrasound. I was so scared and the members there were so nice and talked me through every fear and expectation I had. Slowly they have become family and I couldn't imagine my life without them"- Melissa Larrison, mother of Hanna

    http://www.cherubs-cdh.org/


    CALL TO ACTION: Ask Your Senators to Support Senate Bill S.3396 for CDH Research


    Sen. Sessions joined with Sen. Ben Cardin (D-MD) to introduce legislation this summer to raise public awareness of Congenital Diaphragmatic Hernia (CDH) and place a greater emphasis on medical research to diagnose and treat the disease. Sessions’... grandson, Jim Beau, is a CDH survivor:

    "I am honored to introduce this bill today, and am grateful for Senator Cardin’s support. This is a critical issue and early detection and awareness make a dramatic impact in the survival rate. However, more research is needed and this legislation asks the National Institutes of Health to determine whether a greater emphasis can be placed on CDH research within its existing budget."
    CHERUBS is so proud to be a part of this historic event, the first step to real help to save the lives of babies born with CDH. 
     
     
     
     
     
     
     
     
     
     
     
     
     
    CALL TO ACTION:
     
    On July 18, 2012 Senator Jefferson Sessions (R-AL) formally introduced the Congenital Diaphragmatic Hernia Research Bill, co-sponsored by Senator Benjamin Cardin (D-MD).


    Please ask your Congressmen to support Senate Bill S.3396
    1. Download Letter (DOC or PDF format) to Send To Your Senator / Congressman. Instructions and mailing addresses included.
    2. Include The CDH Research Bill and a photo of your cherub
    3. Sign the CDH Research Bill petition and ask others to sign as well!
     
     
     
     
     
     

    Saturday, October 13, 2012

    Member Quotes - Julie Younce

    CHERUBS Helps Families of Babies Born with Congenital Diaphragmatic Hernia

    "Cherubs has been our rock since our sons CDH diagnosis.  I couldn't imagine going through one day of our CDH journey without them" - Julie Younce, mom of Aaron

    http://www.cherubs-cdh.org/



    Friday, October 12, 2012

    Member Quotes - Neil Rubenstein

    CHERUBS Helps Families of Babies Born with Congenital Diaphragmatic Hernia

    "CHERUBS is an amazing organization that does a tremendous amount with very little. My son was one of the lucky ones to come home after only 1 month. I soon realized that my CHERUBS family were the only ones the truly understood what we went through during our NICU stay. It is very easy for family to forget after the "worst" has passed" - Neil Rubenstein, father of Aidan

    http://www.cherubs-cdh.org/






    Thursday, October 11, 2012

    Member Quotes - Tracy Meats

    CHERUBS Helps Families of Babies Born with Congenital Diaphragmatic Hernia

    "CHERUBS is an amazing support group, a place to come to for support, encouragement, help, and understanding during a difficult time. Having a child with CDH changed my life and my son's life forever and without CHERUBS, the darkest hours would have been unbearable" - Tracy Meats, mom of Ian
    http://www.cherubs-cdh.org/







    Member Quotes - Tara Hall

    CHERUBS Helps Families of Babies Born with Congenital Diaphragmatic Hernia

    "CHERUBS was there with us from the very beginning, helping us get through so many tough times. For 16 yrs we have dealt with this birth defect and have had CHERUBS to help us every step of the way". - Tara Hall, mom to Brandon, age 16

    http://www.cherubs-cdh.org/



    Member Quotes - Chris Weaver

    CHERUBS Helps Families of Babies Born with Congenital Diaphragmatic Hernia

    "CHERUBS is more than a charity, they are "family" who know exactly what you are going through because they walked the same type of journey with CDH . Cherubs gave me HOPE . ♥" - Chris Weaver, grandmother to Navaeh"

    http://www.cherubs-cdh.org/