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Jack Hagelin
September 4, 2002 - March 27, 2007

Hagelin, Jack R.S. passed away on March 27, 2007 of Fairfield, NJ.  Beloved Son of Roy and Charlotte Malfitano-Hagelin, Brother of Christina.  Grandson of Ruth (Unger) and the late Salvatore Malfitano, Reed Hagelin and Marilyn P. Hagelin.  Visitation at the Quinn-Hopping Funeral Home, 145 East Mount Pleasant Ave., Livingston, NJ on Friday from 3:00pm to 8:00pm.  The funeral Service will be conducted from the Funeral Home on Saturday at 10:15am with a Funeral Service at St. Thomas More Church Fairfield, NJ at 11:00am.  Interment Reformed Church Cemetery, Fairfield, NJ.  In lieu of Flowers, those so desiring may make contributions to the “Found NEMO-Finding Cure Foundation” in Jack’s name to PO Box 366, Pine Brook, NJ  07058. www.cure4jack.org

Jack Passed away peacefully surrounded with Love at the Children’s Hospital of Philadelphia, from complications from pneumonia and after a 4 and ˝ year battle, a diagnosis of NEMO Primary Immune Deficiency and Ectoderma Displasia, two rare genetic disorders.  His treatment included both a Bone Marrow and Stem Cell transplants.  In his short 4 and ˝ years he helped science gain more knowledge for this rare genetic condition and through this knowledge to help other children with this same condition.  His infectious personality opened doors to friendships that were made in the Township of Fairfield, the Fairfield Fire Department of which he was an honorary member, the doctors, nurses and staff at the Children’s Hospital of Philadelphia, local hospitals and anyone who crossed his path.  He was a Hero and will be remember in our hearts forever.


 

 

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At two and a half years old, Jack Hagelin was diagnosed with a very rare condition called Ectodermal Dysplasia (ED) with NEMO (Nuclear Factor Kappa B Essential Modulator). NEMO is a very rare primary immune deficiency that has affected fifteen known people world wide. He and his family have traveled to many hospital facilities and there are few doctors who know about this condition. There is no cure for ED, however there is a cure for NEMO. By having a stem cell transplant that will give Jack a new immune system. Learn more ›
 
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What is NEMO?
NEMO is the name of a gene that regulates functions of the immune system.
NEMO is like a "master switch" that is found on the cell of the human body and regulates signals between the cell membrane and the cell nucleus. NEMO is expressed in almost all tissue cells. If NEMO is not present life is not possible. NEMO stands for Nuclear Factor Kappa B Essential Modulator.
Nuclear Factor Kappa B or NFKB is the name of the protein that is used for communication between the membrane and the nucleus. NEMO is known to be the pathway of skin, skeleton, blood vessel and other vital signals. For example, the EDA gene is known to dictate properties of the "ectoderm" or last layer of the skin. The EDA gene uses the NEMO pathway to the nucleus to make the "ectoderm" properties present.

     
What is ECTODERMAL DYSPLASIA?
The ectoderm is the outer layer of the skin, sweat glands, hair, teeth and nails. Ectodermal dysplasia (ED) is a heritable disorder that affects the ectoderm, the outer layer of tissue in a developing baby. ED syndromes affect both males and females of all races and ethnic groups. The ectoderm contributes to the formation of many parts of the body, including the skin, sweat glands, hair, teeth, and nails. During embryonic development, these and/or other parts of the baby’s body, including the lens of the eye, parts of the inner ear, the fingers and toes, or nerves, among others, may fail to develop normally.


 

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