Mini Conference @ Stanford University in California
Last February 03, 2018 I joined a Marfan Volunteered Planning
Meeting at Stanford University here in California. This event was in
preparation for their up-coming National Marfan Conference on July 12 – 15,
2018
That experience was really wonderful, I got the chance to meet
again other people with marfan syndrome, (even had photos with some of them).
During that meeting, they mentioned the possible topics that will be discuss
during the upcoming Conference and at the same time they encourage people to do
volunteer during the event.
Their possible topics during this conference are the
following:
(targeting
medical issues/led by professionals)
Osteoporosis
Feet
Aortic disease
Pain management
Gastro specialist
Eyes (at least two maybe 3 sessions)
Back
Related issues (Loeyes-Dietz
and “other related”)
Feet
Gyn focused on women’s issues
Ob focused on Marf pregnancy
Genetics/research
Dural ectasia/CSF leaks/spinal
headaches
Headaches
And other topics is about how family members cope with
Marfan Syndrome in their family, such as:
Young kids parent
support
Living with
Marfans/inspirational
Finance
Insurance
Sexuality
Meditation/yoga
Being a patient
advocate
Unaffected
spouse/family member support
Support group moms
Support group dads
Heart surgery from
“both sides of the bed”
Talking to your
doc about Marfans
If any of you has inquiry wither covered in the topics
mentioned above or not, I encourage you to send me your inquiry so that I can
bring it up during this conference.
But, as always, I encourage everyone who has Marfan
Syndrome to be an expert with your own condition, by visiting the National
Marfan Foundation website at https://www.marfan.org/
As of the moment I'm still here in Vallejo, California for vacation, I'll be going back to the Philippines on April and plan to come back by June. You can simply reach me through my following email add: at precypiape@yahoo.com or in my precypinoy@gmail.com and you can also contact me in my Phil. Cellphone Number 09167103383 or in
Me and My Uncle
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