[Previous Months][Date Index][Thread Index][Join - Register][Login]
[Message Prev][Message Next][Thread Prev][Thread Next]

Re: [IP] All that knowledge

   Here's yet another approach for what to do with all of your knowledge: 
parent advocacy. In April of 1999, a mom I knew from JDF (now JDRF) suggested 
we meet for lunch. Turned out that 8 of us showed up & all agreed it was 
wonderful to chat, share info, etc. That fall, 14 of us met at a mall & took 
over the restaurant for 3 hours!! In March of 2000, 19 of us attended another 
restaurant gathering about 40 minutes from the original site to accomodate 
other moms. 2 months later, 25 of us met in a private home & thus the "Moms 
Brunch Bunch" was born.
   Starting this past October, then again the week after Thanksgiving, again 
next week & then in mid-March, I've coordinated morning gatherings on 3 
consecutive days in 3 diverse suburban areas around Philadelphia, based on a 
model initiated by the Boston JDRF chapter. The hostess provides her living 
room, coffee, cups, etc & the guests provide their knowledge, questions, 
insights, frustrations, doctor recommendations, etc etc - and something to 
munch on too! LOL....
   JDRF allows me to do all the xeroxing, mailing, etc from their office. My 
data base which had those 25 moms initially last May, now lists about 125 
families with the child's age at dx, doctor, pumping or not, CDE's name, etc 
etc. 1/3 of the kids on the list are pumpers - many attributable NOT to the 
doctor's suggestion, but rather to the parent being empowered by hearing from 
other families who had successfully begun pump therapy.
     After each gathering, I mail out a "newsletter", highlighting diabetes 
events in the community, such as the parents' evening "Survivor Series" that 
my daughter's CDE will be beginning in 2 wks at his suburban office, and the 
forthcoming annual JDRF educational conference March 31st in Philadelphia, 
featuring Dr. Hugh Auchincloss from the Center for Islet Cell Transplantation 
at Harvard Medical School. 
   One of the best "offshoots" of this network was the series of 7 articles 
that I posted here at IP, written for a local newspaper by one of the moms, 
affording families of kids with diabetes superb coverage of the "real deal" 
of life with diabetes.
    Despite 15 years as a high school language teacher, I have to say that 
this "teaching" has been unequivocally the BEST that I have ever experienced &
 the rewards too many to enumerate! Since my daughters are older (we'll be 
empty-nesters in 8 too-short months) & I'm no longer teaching, I have the 
time to spend on this, but there are far less labor-intensive means of 
becoming involved.
    So to those of you wondering what to do with all this knowledge, as JDRF 
has taught me "if you don't ask, you can't get a YES"! Whether it's as simple 
as donating current diabetes books to your local library ( I was appalled at 
how outdated their resources were when Melissa was dx'd) or as complex as the 
priceless resource Michael has provided with IP; creating a support network 
via local CDEs or hospitals or schools; asking a school nurse when her 
professional association will be meeting & offering to speak briefly or even 
prepare some materials for them; peridoically popping into a Parents chat 
room at www.childrenwithdiabetes.com & offering insights about pump therapy; 
signing up for government advocacy efforts via your local JDRF or ADA; 
volunteering at a JDRF office & meeting other families, etc etc etc , the 
possibilities are limitless & the opportunity to "do good" equally vast. The 
pump companies also sponsor "buddy programs" in which you could be a 
phone/cyber/in-person contact for a new pumper. If each of us did one thing 
to disseminate knowledge gained through experience, it would have a 
tremendous "ripple effect", particularly for those underserved by the medical 
   Lastly ( and then off the soap box to refuel with caffeine!), ever since I 
battled breast cancer 3 years ago, I have espoused the following mantra: If I 
don't DO SOMETHING with all that I've learned/experienced, then the 
cancer(diabetes) wins twice: by robbing me of body parts & also robbing me of 
my voice! Far too many of us grew up thinking of doctors as omnipotent idols 
whose word was law, & yes, many of us have since learned that's not 
necessarily the case, particularly when dealing with a chronic illness...BUT 
there are still many, many newly dx'd patients who haven't yet learned about 
being their own empowered advocate; & that's where our knowledge can best be 
    Sigh..once a teacher, always a teacher! LOL
Regards, Renee (18 yr old Melissa's pump mom...pumping since March '96)
for HELP or to subscribe/unsubscribe, contact: HELP@insulin-pumpers.org
send a DONATION http://www.Insulin-Pumpers.org/donate.shtml