Thursday, September 1, 2011

Sept Pain Awareness Month - activities in WI

Sept is Pain Awareness Month

Posted below see the details for a Walk/Run being held in Greenfield, (WI) hosted by Advanced Pain Management a pain group with offices throughout WI and which I have worked with on the Pain support group, who I have collaborated with (as well as ASPMN-WI) regarding the state secured-PAM Proclammation and on general awareness. APM will be donating proceeds from the walk/run directly to the American Pain Foundation and I will be attending the Walk as one of 2 represenatives for APF and hosting a table with many of our educational materials that day. The day promises to be filled with excellent exercise, good materials and a chance to be in the outdoors - all great things as well as a chance to learn more about how to treat pain. See below.

Other events I will be hosting in WI include our secured PAM Proclammation, a live table at UW Hospital (Madison) on tues, thurs and fri the 2nd full week of Sept. with a diverse option of materials available to patients, healthcare providers and families interested in learning more about how to help themselves or help others.

This next week my regional manager and I will be on a call with each other regarding planning the afternoon portion of our Pediatric Pain meeting which is tentatively being planned for next summer/fall - the morning portion of this meeting with include healthcare providers and a focus on talks aimed at healthcare providers while the afternoon portion will be geared towards families and children with pain. Interestingly on a side note one of our speakers is also a Peds Pain provider in CA with a vast knowledge of MPS of which I learned after I referred another MPS I family to her! Small world! :)

This morning I was on a conference call with the MPS I marketing director and another MPS I/lysosomal associate  I have previously known regarding the interest in focusing on and identifying the un-met needs of adult with MPS I and what can better be done. I am in the process of identifying several young adults and several older (old for MPS I is 40's that I know of at this point)  adults to participate in a skype/conference call to give in-put on what we all brainstorming together feel can be better done. After this call I will then re-group with the 2 marketing folks and we will decide on what we think should be done. One thing we've decided is to re-purpuse the Gaucher materials for adults with MPS I but these will also have to be further detailed as Gaucher and MPS I are 2 similar but yet very different lysosomal disorders in which people are typically diagnosed young and grow up with the disorders - MPS I just happens to be one of the lyso disorders that affects virtually every organ, joint, system and cell.  This seems like a interesting project and looking fwd to taking it on.

I will cont to update with further Pain Awareness Month activities including our APF 'If I lived in a world with less pain' campaign on facebook and updates to the WI American Pain Foundaion-Action Network (WI) page.!/pages/American-Pain-Foundation-Action-Network-WI/131350163565401 - WI APFAN page

Remember see below - and   I will also update when I know something from my neurosurgeon/office I am just praying I do before the weekend so I can worry a little less about that all and just know what her thoughts are! Knowing is sooo much easier than wondering!



Pain Awareness 5k/3k Run/Walk

Location: Greenfield Park, 2028 South 124th Street, Milwaukee, WI 53227-1047
Audience: Healthcare Professionals, Public
Start Date: 24 Sep 2011 - End Date: 24 Sep 2011

Time: 9:00 A.M. & 9:05 A.M.
Race Packet Pick Up: 7:00 A.M. - 8:30 A.M.
The 5K run will begin at 9:00 A.M. with the walkers following shortly thereafter. The 5K course will initially travel a traditional-style cross country run course following the scenic surroundings of the Greenfield Golf Course on the perimeter of the property. You will run the gently rolling hills of the golf course as a trail run for the first 2K.
The remaining 3K will be run through the plush forest area of Greenfield Park on paved terrain. The 3K walk will begin at 9:05 A.M. The event will run through Greenfield Parks beautiful paved trails. Strollers and wheelchairs are welcome. To accommodate the broad range of abilities and skill levels, the 3K walk will proceed along the paved pathways.
Aid stations will be provided on both courses. Please, no pets.
Following the run/walk, APM will host food, fun and awards in the picnic area!
Fees: $25 Early Bird Registration/ $30 Race Day Registration
Registration Closing Date: Thursday, September 22, 2011 at 12:00 P.M. PST
Additional information, online registration and mail-in registration forms can be found at

If I lived in a World with Less Pain Campaign:!/event.php?eid=140424429383677

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