Thursday, June 21, 2012

I should have included that we discussed folic acid and the lack of media attention given to its importance in lessening the incidents of neural tube defects, which spina bifida & congenital hydrocephalus are just two examples.  Every women, of childbearing age, should know her folic acid levels and consult her physician (GP, OB/GYN) about what level should be maintained.

One of the main reasons for 'enriched' flour being used in so many of our prepared foods and ingredients like flour, is so that ALL women get additional folic acid.  There are also a variety of whole foods that are easily accessible in the produce section that are higher in folate (folic acid) than other foods.  I'll include a list later.

Saturday, June 16, 2012


As always, it was great seeing our group again.  Time went by so fast.

Among other things, we discussed the upcoming Hydrocephalus Awareness Month in September and ways we can bring awareness to the condition & to the group.  We had a promising lead with a local radio personality who expressed support for the group & our mission.  However, that seems to have fallen through.  Hopefully things will change before Sept.  It would be great to do one or two radio interviews, talking about various aspects of hydrocephalus.

I got an email from an unknown person, who was asking about shunts.  In general, there are SO many of them and so much research going on at any given time that it is impossible to tell what type of shunt or even if it is specifically for hydro.

I'm looking forward to the next meeting, on July 21st, from 12:45 to 3:00 pm.  As always, we welcome drop ins & kids, as well as families, friends, caregivers & those of us living with the condition.  The Casey Room at Swedish Cherry Hill Campus has been a great meeting room for us.  It is located inside the dining room, just down the hall from Starbucks!