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Welcome to the NJ/PA Eosinophilic Support Group |
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Eosinophils
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What is EE?
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What is
EGID?
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Us
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Who are we?
We are a support group for adults and parents of
children with
Eosinophilic Esophagitis (EE) and Eosinophilic Gastrointestinal
Disorders (EGID),
living in NJ,
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We offer:
Eosinophilic Gastrointestinal Disorders Please be
sure to visit our Fundraisers
Page for
information about upcoming important fundraising events! |
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REGID - Registry for Eosinophilic Gastrointestinal
Disorders There is now a Registry for Eosinophilic
Gastrointestinal Disorders (REGID) at http://regid.org/ Patients with Eosinophilic Esophagitis (correctly abbreviated EoE)
and Eosinophilic Gastrointestinal Disorder (EGID) can register soon, but they
are still working on the login and registration form and it is not ready yet. REGID was funded by the NIH and is a national registry of people
affected by EoE/EGID. More info can be found on their site, as well as a
short video by two of the Drs involved (from Cincinnati). The following
paragraph was taken from their website: "The Registry for Eosinophilic GastroIntestinal
Disorders (REGID) is a collaboration of medical centers, professionals,
families, and individuals whose mission is to improve the knowledge,
research, and outcomes for people living with eosinophilic gastrointestinal
disorders. REGID is not only a national registry of people affected by
eosinophilic gastrointestinal disorders but also a forum to enhance the
connection of people to resources and research." They also have informational pages about EoE/EGID. It sounds like
it will be a beneficial resource! Please continue to check back on the site
and when it is all up and running, be sure to register all those diagnosed
with EoE or EGID as this will not only lead to a better count of how many
people have the disorders, but may lead to further research grants
specifically for the disorders, new treatments, etc! |
Amazing News for Eosinophilic Disorders
and Food Allergies in General On July 13, 2010, the top 200
charities were announced in Chase Community Giving. Out of 500,000 charities
that entered, APFED (American Partnership for Eosinophilic Disorders), CURED (Campaign
Urging Research for Eosinophilic Disease) and Kids
With Food Allergies were ALL voted
into the top 200 and they will receive $20,000 EACH. That comes to
$40,000 specifically for Eosinophilic Gastrointestinal Disorders out of a
total of $60,000 that benefits food allergies! Every vote really did
count in this one and it was a real nail-biter, but thankfully it was also a
huge success! “Key research on
eosinophils has confirmed the important role they play in inflammatory
diseases of the upper GI tract,” says Griffin P. Rodgers, M.D., director of
NIDDK, co-sponsor of CoFAR. “We hope that the new genetic studies involving
EGIDs will help researchers identify and develop novel treatments.” “We are pleased to
continue our support of CoFAR, NIAID’s major program dedicated to exploring
the causes of food allergy and developing new treatment and prevention
strategies,” says Daniel Rotrosen, M.D., director of the Division of Allergy,
Immunology and Transplantation at NIAID. “By expanding CoFAR’s research goals
to include studies of the genetic components of food allergy, and broadening
the research to include food allergy-associated diseases like EoE, we expect
that its work will continue to increase our understanding of how food elicits
an allergic reaction in certain people.”
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BIG
NEWS!!!! Gene Site
Found For Eosinophilic Esophagitis!!!!! According to a press
release from CHOP and article found on EurekaAlert, among other sources: “EoE was linked to a
region of chromosome 5 that includes two genes. The likely culprit is the
gene TSLP, which has higher activity levels in children with EoE compared to
healthy subjects. In addition, TSLP has been previously linked to allergic
inflammatory diseases, such as asthma and the skin inflammation, atopic
dermatitis.” http://www.eurekalert.org/pub_releases/2010-03/chop-gsf030410.php |
To help you better understand how
Eosinophilic Gastrointestinal Disorders affect families |
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We need to
act! The NIH
(National Institutes of Health) currently sets aside $0 annually for EE/EGID
research, despite the increasing prevalence of the disorders (the estimated
prevalence of Eosinophilic Esophagitis in 2007 was 1 in 2000). If you
are interested in helping in the push to getting Eosinophilic Disorders on
the annual NIH funding list, please phone & email your senators,
Representatives and the NIH. Let them know Eosinophilic Disorders have
ZERO annual funding earmarked for research and how important that research money
would be. Let them know how the disease affects you and your family. We need our
legislators to petition the NIH to add Eosinophilic Gastrointestinal
Disorders to the list of diseases that get annual NIH research funding, but
they need to hear from their constituents, to let them know how
important this is. |
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APFED (American Partnership For Eosinophilic
Disorders) has created a wonderful new cookbook It’s
called: “Extreme
Cooking for Exceptional Diets” The
cookbook is available at the
APFED website.
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The 4th annual National Eosinophil Awareness Week was 5/16 – 5/22/10 While
that week was a great time to spread awareness, every day is a good day to
raise awareness about Eosinophilic Disorders ! Last
year at this time, actress/singer Demi
Lovado (Disney star) and Ned Spektor (manager for the Jonas Brothers) were
honored as APFED's Education Embassadors. Here's a
link to the video of their touching
speeches at the 5/11/09 Gala in Hollywood: http://www.youtube.com/watch?v=KDV4lq3LU_4 |
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New ICD-9 codes became effective on 10/1/2008! The new codes are: 558.42 - eosinophilic colitis. these disorders; Over the past few years, American Partnership for Eosinophilic
Disorders (APFED) worked with the CDC's Center for National Health Statistics
(NCHS) to create unique ICD-9-CM diagnosis codes for eosinophilic
gastrointestinal disorders. It was very important that new specific
ICD-9-CM diagnosis codes be created for eosinophilic gastrointestinal
disorders (EGIDs). |
“National Eosinophil
Awareness Week” The resolution (House Resolution 296) was unanimously passed
on 5/15/07! National Eosinophil
Awareness Week is the 3rd week of May, every year from here on
out! Having this week will help raise awareness for all
eosinophilic disorders (EE, EGID, HES,
& Churg Strauss). Congratulations to everyone who worked so hard to get this
passed (within a month, no less).
Thanks to the parents at APFED who initiated it, ~And~ THANK YOU to all of the congressmen & women who agreed to
co-sponsor the resolution! Please see the NEWS Page for details. |
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****DISCLAIMER**** This website has been set up by parents of children
with eosinophilic disorders. We are
NOT doctors. The information shared on
this website is not intended to replace advice from your licensed healthcare
provider. Decisions regarding
medical care should always be made with your licensed healthcare provider. Please consult your
doctor before making any changes in medical care. No one should ever disregard or
delay seeking medical advice due to the content of this website. |
Eosinophilic esophagitis,
eosinophilic gastroenteritis, eosinophilic gastritis, eosinophilic colitis,
eosinophilic enteritis, eosinophilic gastrointestinal disease,
eosinophilic, eosinophil,
eosinophils, food allergies, EE, EGID, EG, EC, HES, feeding tube, enteral
feeding, g-tube, ng tube, mic-key button, Neocate,
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group, NJ, Pennsylvania