Breath of Hope CDH Jamberry Fundraiser

An amazing Mom of a CDH survivor, Lindsey, is hosting a CDH Jamberry Fundraiser.  Proceeds from the sales will come to Breath of Hope and we will add them to our Research Fund.  She is having games where you win free samples and you can even contact her if you know others who may want to order or participate.  The event is on Facebook. 

Jamberry Wraps are for finger and toe nails and the last up to 2 weeks.  There is even custom wraps with the CDH Awareness Ribbon to order. 

And if you order three you get one free from Lindsey's website

You do not have to be on Facebook to order you can order HERE

CDH Research Grant to be Awarded

Currently Breath of Hope has $5,000 to award a grant to a research study! 

 

An anonymous donor has come forward to offer a matching challenge grant of up to US$5000. That means that when you donate a contribution of equal value comes from a secret source and effectively doubles the impact of your giving.  All funds raised from January 18^th to March 15^th which will also go to CDH research.  We must raise $5,000 (or more) to match this donation.  The donation money will be split to the following CDH Research Studies:

Congenital Diaphragmatic Hernia (CDH) StudyMass General/Boston Children’s and

DHREAMS Study – Columbia University MedicalCenter

Both of the studies above have come to our CDH Summits to present and tell families and hospitals across this nation the work they are doing and obtain samples for those who wish to participate.  We want to give back to them for their collaboration on these events and we also know they are very dedicated in the research they are conducting in finding a cause or reason that may one day lead to better treatments! 

How you can help?  Donate or ask others to donate to Breath of Hope and mark the payments “For CDH Research” it will be deposited into our research fund.  Hold a fundraiser to collect funds, contact us (boh@breathofhopeinc.com) if you need more information!  We hope to match this donation and award either $7,500 or more to help further their investigations and studies. 

We also would like to have families in the Boston and New York areas to award the checks to each study and thank them for their dedication!   Contact us (boh@breathofhopeinc.com) if you would like to help coordinate a meeting with families in March to present a “Big Check” to these amazing researchers! 

CDH Genetic Research and What Will be the Results?

Recently we became aware of another CDH Genetic Study which has made headlines and we appreciate all the research so many out there are doing and we even encourage families to participate.  This is not in any way to be interpreted that we are discouraging the research at all.  We are looking into the future and what will this information mean?  These are important questions to ask and to realize answers sometimes lead to even more questions. 

There have been several genes and micro deletion of genes and syndromes which appear to be prevalent with those affected by CDH with no real consistency.  Why we have always believed as many doctors do out there that CDH is is considered a multifactorial condition, simply meaning they don’t know what causes it but they believe it is caused by many factors together.  It could be that an exposure did something to cause a gene to have a micro deletion or not be as it should.  With added genes, we know this could occur during conception itself. 

We now know women who who are trying to conceive or are pregnant to prevent Neural tube defects should take the B-vitamin folic acid.  Prenatal vitamins contain B-vitamin folic acid. Many thanks to the March of Dimes for the research provided. We also know, not always does this prevent Neural tube defects from occurring.  We also now have testing which may predict many birth defects and we know through Amniocentesis is used to diagnose chromosomal and other fetal problems.  However, it does not prevent these birth defects.  It predicts them, diagnoses them, but in no way does it treat them.  

If through all the studies of genetics and congenital diaphragmatic hernia, there is discovery of genes, genomes or micro deletion of genes, what then?  Again, we are predicting and diagnosing but not preventing them.  And if you prevent them, this means you would not have that child affected by CDH.  What of the individuals who may be marked as carriers, would they be cautioned to never have children?  We have families who have been diagnosed as carriers and who do take the chance (and have had beautiful and healthy children).

If in the future, they could manipulate the genes, could that possibly cause other issues?  These studies are all in process and we truly do appreciate the research and time and funding going into them.  As we look beyond when there are answers to the how and whys the deeper questions will be how are they treated?  As stated at the top of this blog post, answers are being found or appear to be on the horizon but once we have these, there are more questions.  

Chili's Supporting CDH Research in NJ

Thursday, May 17, 2011 from 4 PM - 11 PM

you can present this flyer above to

HOLMDEL CHILI'S

2105 Highway 35, Suite 101

Holmdel, NJ (732) 671-2273

both dine in and take out orders will qualify for Chili's to donate 15% of the sales to Congenital Diaphragmatic Hernia (CDH) Research at The Children's Hospital of Philadelphia! 

Please feel free to share this and pass on to anyone you know!

Thank you!