Sunday, September 27, 2009
T-shirts
Found out there is going to be an Erdheim-Chester T-shirt to spur some interest. I've already ordered some for wifey, Mom and me. I'm excited about it. But, I'm hoping they'll be used to help with funding research.
Thursday, September 24, 2009
Fentanyl
The new dosage of Fentanyl is doing really well. Was just a matter of giving it a little time to get used to.
Thursday, September 17, 2009
opportunities
After attending our small group, I came away with new ideas last night. Two wonderful gentlemen suggested I call two major universities here in NC. The idea is to check on the possibility of speaking to medical students, informing them about rare diseases. Then they can enter the profession aware of such afflictions. I like that idea!
Saturday, September 5, 2009
Long Time No See :-)
Well, it's been a while.
Had an appt w/ the oncologist late Aug. Said I am doing VERY well and reduced my patch (Fentanyl) from 25 mcg to 12.5. Took a little gett'n' used to. But, I'm doin' fine. Jus' better not go more than 72.5 hrs before changing patches. Whoo!! Also, have another MRI scheduled for November. Didn't say anything about an Abdominal/Chest CT scan.
Found out Sept. is Histiocytosis Awareness Month. For anyone who may not know, Erdheim-Chester is a Histiocytic disorder. More info is available at histio.org or erdheim-chester.org.
Had a speaking engagement about ECD, rare diseases and how God has used this disease as a blessing to encourage me and others I get the chance to talk to. I am looking into a possible radio interview w/ a local FM radio station, too.
The engagement went very well, and the Manager of the facility kept paperwork both on ECD and procedures on how employees may donate a percentage of their income, even if they don't list the HAA (Histiocytosis Assoc. of America) as one of their charitable organizations.
I chatted w/ my ECD group today. We are looking into more ways to encourage public awareness of the disease. One of the ideas is a video and another a tee shirt. If anyone has an idea about the video, please let me know.
September is Histiocytosis Awareness Month!
Now is the time to tell the world about Histiocytic Disorders and we need your help!
We have designed a number of ways for everyone to get involved in raising awareness.
It's easy to use our newly updated Histio Awareness campaign materials to spread the word.
Let's work together to educate the public about Histiocytic Disorders and reach our ultimate goal of finding a cure!
Visit the Awareness Headquarters for details on how you can get involved today!
Had an appt w/ the oncologist late Aug. Said I am doing VERY well and reduced my patch (Fentanyl) from 25 mcg to 12.5. Took a little gett'n' used to. But, I'm doin' fine. Jus' better not go more than 72.5 hrs before changing patches. Whoo!! Also, have another MRI scheduled for November. Didn't say anything about an Abdominal/Chest CT scan.
Found out Sept. is Histiocytosis Awareness Month. For anyone who may not know, Erdheim-Chester is a Histiocytic disorder. More info is available at histio.org or erdheim-chester.org.
Had a speaking engagement about ECD, rare diseases and how God has used this disease as a blessing to encourage me and others I get the chance to talk to. I am looking into a possible radio interview w/ a local FM radio station, too.
The engagement went very well, and the Manager of the facility kept paperwork both on ECD and procedures on how employees may donate a percentage of their income, even if they don't list the HAA (Histiocytosis Assoc. of America) as one of their charitable organizations.
I chatted w/ my ECD group today. We are looking into more ways to encourage public awareness of the disease. One of the ideas is a video and another a tee shirt. If anyone has an idea about the video, please let me know.
September is Histiocytosis Awareness Month!
Now is the time to tell the world about Histiocytic Disorders and we need your help!
We have designed a number of ways for everyone to get involved in raising awareness.
It's easy to use our newly updated Histio Awareness campaign materials to spread the word.
Let's work together to educate the public about Histiocytic Disorders and reach our ultimate goal of finding a cure!
Visit the Awareness Headquarters for details on how you can get involved today!
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