The RGL Foundation

You Are Not Alone - Support Groups

Many of the emails we receive are from parents who feel like they are all alone in this fight. we know this feeling all too well. That is why we would like to list your support organization here on our website. Contact us at rglfoundation@verizon.net to add your support organization to our site. We know how important it is to have other parents to talk to and compare notes with.

Hearts of Hope SE Michigan,is an organization of mothers of children with congenital heart defects. Visit their website at www.heartsofhopemi.org and find out more.

Research and Related Articles on PLE (links)

Google Search: eMedicine Specialities> Gastroenterology>Intestine>Protein Losing Enteropathy by Dr. Richard Wight

http://www.tchin.org/resource_room/c_art_04.htm

http://www.nlm.nih.gov/medicineplus/ency/article/002277.htm

http://ccforum.com/content/7/2/185
http://ccforum.com/content/cc2187

Book Reference: "Principles of Gastroenterology"
Chapter 7, Section 18, Protein Losing Enteropathy.

http://www.mdlinx.com/InternalMDLinx/xml-article.cfm/1999073

http://www.peacehealth.org/kbase/nord/nord91.htm

http://ats.ctsnetjournals.org/cgi/content/short/84/5/1619

http://rileynorton.blogspot.com/2007/10/ple-at-bay-not-gone.html

Helpful Resources - Financial

For children born with heart defects that require long term medical care some states may have what is called Disabled Children's Medicaid which can ease the burden on your own finances and health insurance. Check with your local Health and Social Services office and ask about this benefit.

We understand that having a sick child at home can be a drain on your finances. Often one parent stops working to take care of the child. It is a good idea to let your power company know that you have a child who is seriously ill and that no matter what, you need to always have your electric and gas on. Having this on your account information is helpful when trying to work out a payment plan if you get behind. Power companies tend to be a little more sympathetic.

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Upcoming Events

Thank you all for your support in 2006. You enabled us to take care of many of our start up expenses. Through your continued support in 2007, we have successfully covered all of our expenses for the year including the costs to cover our 501(c)3 application. Great news! We received our approval letter from the IRS for our 501(c)3 status. We are officially a ta exempt charitable organization retroactive to our date of incorporation of July 31, 2006.

This is what is left for this year:

PAINLESS AND EASY WAY YOU CAN HELP!!!!!!!!!!
Ask your employer if you can set up collection boxes for used inkjet, laserjet and toner cartridges. We will supply you with the boxes and labels. All you would need to do is tape the box up fill in the top portion of the label with information we will provide and call FedEX to pick the box up. Shipping is prepaid. The recycler pays us directly for the cartridges. Please contact us at rglfoundation@comcast.net or call us at 302-887-9161 if this is something you would be willing to do.

Contact Us

To Learn More about the Foundation and how you can help, contact us at rglfoundation@comcast.net or call us at 302-887-9161 or 302-740-3044.

To make a tax deductible contribution, make checks payable to "The RGL Foundation" and mail them to:

The RGL Foundation
46 Greenbridge Drive
Greenbridge
Newark, DE 19713

Keep posted on this site as we will soon have a Pay Pal account for those who wish to make a secure contribution via credit card.

Medical Advisory Board

Drs. Baffa, Pizarro, Rychik, Mehta, and Jacobs have graciously volunteered their expertise and assistance to the The Rebekah G. Leithren Foundation, Inc. {Note: This section still under construction, checking for informational errors.}

Nemours Cardiac Center
Jeanne M. Baffa MD
Chief Cardiologist

Dr. Baffa @ http://www.nemours.org/

Rebekah G Leithren Park Dedication

The Park Dedication for Rebekah was a wonderful event. It was attended by friends, family, neighbors and some of the medical staff who took care of Rebekah at A. I. DuPont Hospital for Children. Also in attendance was State Representative William A. Oberle and his wife Sally, New Castle County Council President Paul Clark, General Manager for Special Services at New Castle County, Rich Przywara and Nellie Manlove, Representative Karen Venezky's assistant. Sorely missed was Representative Karen Venezky who had prior commitments. We are so grateful to Karen without whom this day would not have been possible. I understand that she is not running for office again this fall. We wish her well and want her to know that she is leaving some big shoes to fill.

Help Wipe Out PLE!!

We Need YOUR Help to Wipe Out PLE!!

Due to PLE, Rebekah Leithren was robbed of the opportunity to enjoy a shot at life after her heart transplant. While it is too late for her, there are other children just as vibrant and precocious as Rebekah who are suffering with the effects of this disease. Many of these children have other heart problems as she did, some do not.

Without the adequate research necessary the long term prognosis for these children is not good. As mentioned earlier, the known treatments only buy time and have detrimental effects themselves over long term use.