Genetic Alliance Advocates Partnership Program

Just received this news about great opportunities for more advocate work. It would be an honor to attend either of these events. Plus, I've never been to Hawaii!
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Genetic Alliance invites you and your colleagues to apply for one or both of the upcoming Advocates Partnership Program opportunities at:

American Society of Human Genetics Annual Meeting
October 20-24, Honolulu, Hawaii

National Society of Genetic Counselors Annual Education Conference
November 13-15, Atlanta, Georgia

The Advocates Partnership Program provides you with:

* participation in every aspect of the conference
* amazing access to the genetics community
* exclusive daily briefings with professionals
* waived, full registration to the meetings
* up to $250 reimbursement for transportation, hotel room, or airfare


Where do you and your interests fit in the overarching field of human genetics?
ASHG is the premier conference to meet people who work in all areas of human genetics, including research, industry and policy. Come and participate in educational, scientific, and social discussions about the entire translational research pipeline.

Have you ever wondered what genetic counselors do, besides interpret genetic information?
NSGC is the place to learn more about the issues affecting genetic counseling and how strengthening the relationship between genetic counselors and advocacy groups is a win-win for everyone.

To apply, please fill out the application and return it to tmurza@geneticalliance.org no later than Friday, August 28, 2009 for ASHG and Friday, September 11, 2009 for NSGC.

For more information and program requirements please visit:
http://www.geneticalliance.org/advocates.opportunities

If you have any questions, please contact Tetyana Murza at tmurza@geneticalliance.org or (202) 966-5557 ext. 205.

Advocate Mentor Program

I am thrilled to be accepted to attend an Advocate Mentor Program at Indiana University April 21-23, 2009. This program is bringing advocates from Atlanta, Houston, Denver and Indianapolis to participate in education and experiential learning opportunities in genomics, proteomics and pharmacogenetics. I get to go because they accept advocates from other areas based on space available. :-) The Research Advocacy Network and Young Survival Coalition support the program.

This program works with advocates to provide an understanding of the new science in genomics, proteomics and pharmacogenetics. Participating advocates will meet and work with researchers in these areas. The program I am going to is not offered in Illinois right now, but is being offered in Indianapolis. The best part is that I received a scholarship to attend and all travel and expenses are paid for! 

A few details about the program. It is a project of the Advocate Core of the Indiana University Department of Defense Center of Excellence Research Grant (https://cdmrpcures.org/ocs/index.php/eoh/eoh2008/paper/view/1343). The program includes educational webinars before the face-to-face sessions, and the on-site sessions include experiential learning opportunities like being in the lab and spinning down samples and following tissue samples. I can't tell you how much I am looking forward to that experience. My inner scientist is jumping for joy!

I hope that when I am back from the Advocate Mentor Program I can have a chance to share my experience with other Patient Advocates. Even further, I hope to find out how we could get this program to happen in Illinois, involving the NCCTG and local researchers. It would be great to build local research/advocate relationships so that we can serve on study sections, concept and protocol review committees and ad hoc committees needing advocate input. 

8 weeks to go

and I am feeling really unprepared. Not physically. I know I can do this physically. But I haven't yet gotten my walking shoes. I haven't looked for a sleeping bag or mattress. I think I need to be sending in my medical form or some such thing. I haven't thought about who I might share a tent with. But I still have time for all of this, don't I?

I've been tracking my miles since April, and I have racked up over 450 miles so far. That's pretty good. This weekend I am supposed to walk 15 miles Saturday and something like 10 or 12 on Sunday. It's so time-consuming, but I will try hard to fit it all in.

We have a fundraiser on July 8. I am only halfway to my goal.

Still a lot of work and preparation to do.

Progress

After 2 weeks of tracking my walking steps and recording my mileage, I found out that my stride really is 2,000 steps = 1 mile. I had been basing my mileage on 2,500 steps equaling 1 mile. So I have vastly underestimated my miles. Oh well. I thought my average mileage per day, without trying to do anything extra, was 3 miles (7500 steps). My average was really 3.75 miles, or even 4 miles/day. Okay, probably not that big of a deal. But it did make a difference when I looked at my long mileage days. My 8 mile days were really 10 miles, for example.

It feels like I am getting a slow start to increasing my walking, but the other evening I got on the treadmill and walked while I watch TV. Boosted my miles to 9 that day. I'm also riding my horses more since the weather is finally nice, and that boosts my miles. I've also noticed that I am generally more active at lunch time and when I am doing my chores around the barn. I just add extra things in all the time. (I admit, today I could have helped my husband pick up the trillions of sticks and branches on our 5 acres, but I stayed in the house instead. Would have been a great way to rack up miles!) So the past couple of days my average has been 8 miles a day. Not that bad. The 3 Day training guide is still asking for less than that each day, so I think I am ahead.

Still need to get shoes that won't give me blisters! That will have to wait until next payday, since all my money has gone to the horses and donkeys this month.

Also on my to-do list: follow-up on the fundraising activities!

Fundraising Ideas

I've been doing some brainstorming for fundraising ideas and came up with 2 pages worth! Now I need to find the staff to go out and get the things organized and done. :-) I will be relieved when I have reached my minimum donation amount. The good news about the fundraising is that I'm thinking about all FUN ideas! Dog biscuits, wine tastings, horse washing, and it goes on and on.