September 1st Marks the Start of the First Ever “National Hydrocephalus Awareness Month” in the United States!
The effort led by the Pediatric Hydrocephalus Foundation, Inc. to have Congress designate September as “National Hydrocephalus Awareness Month” is being realized today, as September 1st starts the first ever “National Hydrocephalus Awareness Month.”
In addition to raising awareness about Hydrocephalus, H. Res. 373, which passed at the end of July, is a call to action:
Whereas public awareness, professional education, and scientific research regarding hydrocephalus should increase through partnerships between the Federal Government, health care professionals, and patient advocacy groups, such as the Pediatric Hydrocephalus Foundation;
Whereas these public-private partnerships would ensure that individuals suffering with hydrocephalus and their families are empowered with educational materials, informed about the latest research, have access to quality health care, and are able to advocate for increased research and funding in order advance the public’s understanding of the condition, improve the diagnosis and treatment of hydrocephalus, and one day, find a cure; and
“We are so happy that we were able to get this done for this September. The PHF has only been in existence for 8 months and to have this accomplishment, which took 3 months from start to finish, is pretty amazing, and shows the strength, dedication and commitment from the Hydrocephalus community”, said Kim Illions, President of the PHF, Inc.
Michael Illions, the National Director of Advocacy for the PHF, Inc. added that “The response from Washington was great. Everyone we met with as we were building support, was interested to learn just how serious and common Hydrocephalus is. The hundreds and hundreds of phone calls, emails, letters and faxes from parents, family and friends within the Hydrocephalus community certainly opened up some eyes and made Congress take notice and action on the Resolution.”
“National Hydrocephalus Awareness Month” will be celebrated on September 13th, as the PHF, Inc. holds their signature event at the Roosevelt Park in Edison, NJ. The PHF 2009 WALK & Family Fun Day will be attended by over 300 people.
To register for the WALK and/or donate to the PHF, Inc., go to:www.HydrocephalusKids.organd click on “Register” or “Donate.”
All proceeds will benefit the Pediatric Hydrocephalus Foundation, Inc, the nation’s largest organization dealing solely with the support, education, advocacy and funding for research of Pediatric Hydrocephalus.
For more information please contact Kim Illions atkim@Hydrocephaluskids.orgor (732) 634-1283.
I wanted to share this information with you all, because this is a huge feat! If you don't know, my son and his condition of hydranencephaly (the whole reason behind this blog), is partly hydrocephalus. Hydrocephalus is "simply" water on the brain, and Brayden's condition is this and anencephaly, no brain, combined. I was thrilled to see that September would be recognized as "National Hydrocephalus Awareness Month" for the first time this year! Now to learn how to proceed with a "National Hydranencephaly Awareness Month." Anyone have any suggestions?
September 1st Marks the Start of the First Ever “National Hydrocephalus Awareness Month” in the United States!
The effort led by the Pediatric Hydrocephalus Foundation, Inc. to have Congress designate September as “National Hydrocephalus Awareness Month” is being realized today, as September 1st starts the first ever “National Hydrocephalus Awareness Month.”
In addition to raising awareness about Hydrocephalus, H. Res. 373, which passed at the end of July, is a call to action:
“We are so happy that we were able to get this done for this September. The PHF has only been in existence for 8 months and to have this accomplishment, which took 3 months from start to finish, is pretty amazing, and shows the strength, dedication and commitment from the Hydrocephalus community”, said Kim Illions, President of the PHF, Inc.
Michael Illions, the National Director of Advocacy for the PHF, Inc. added that “The response from Washington was great. Everyone we met with as we were building support, was interested to learn just how serious and common Hydrocephalus is. The hundreds and hundreds of phone calls, emails, letters and faxes from parents, family and friends within the Hydrocephalus community certainly opened up some eyes and made Congress take notice and action on the Resolution.”
“National Hydrocephalus Awareness Month” will be celebrated on September 13th, as the PHF, Inc. holds their signature event at the Roosevelt Park in Edison, NJ. The PHF 2009 WALK & Family Fun Day will be attended by over 300 people.
To register for the WALK and/or donate to the PHF, Inc., go to:www.HydrocephalusKids.organd click on “Register” or “Donate.”
All proceeds will benefit the Pediatric Hydrocephalus Foundation, Inc, the nation’s largest organization dealing solely with the support, education, advocacy and funding for research of Pediatric Hydrocephalus.
For more information please contact Kim Illions atkim@Hydrocephaluskids.orgor (732) 634-1283.