getting the word out to neurology depts at major academic hospitals

[Guest guest]

this is what i've been doing to get 4s recognized; i go on the web to get to

websites of academic hospitals(bostons childrens hospital/harvard medical,

strong memorial/univ of rochester) or famous large clinics(mayo clinic,cleveland

clinic). i usually go right to the neurology depts or intake coordinators to

speak to someone to see if they can help with this condition. or i will find a

dept head and use his contact info to email him about the condition. most say

they never heard of such a condition and try to say they may not be able to

help. i thank them and then ask them; who do THEY KNOW who can help all these

people who are suffering with this condition. they end up talking to their

colleages to see if anyone can help. we speak on the phone and emails several

times. i get different referrals to various persons who i also speak to. its a

long and tedious process but someone,somewhere will be able to help. i've

actually spoken to 2 researchers;one in amsterdam and one at N.Y.U. who are

researching erasing fear memories with propanol but its years away for us. they

have done it successfully with people in the studies. i'm talking to someone at

johns hopkins in the brain institute. she is speaking to some of the 500

neurologists they employ to see if they can help. some contacts are helpful and

gracious,some are distant but i always tell them about my desire to find help.

when i'm done they know what misophonia is!