Friday, March 30, 2007

Final Door Hanger

Here is the version of the door hanger as it'll print on the perforated paper (the X shows where the doorknob goes). I'm taking it to Staples to make copies onto our bright yellow paper. It'll be a color copy so that the photo doesn't disappear. They'll do a test run to make sure the perforations don't tear in the copier.









Thursday, March 29, 2007

Gazebo!

Here is the gazebo in Baker Park in Frederick, as modelled by my grandson, Noah! It's near the band shell and the rec center. I've put in an application to rent it on 7/22/07 from 8:30 a.m. - 2:00 p.m. The lady on the phone said it's available, so unless another application hits her desk before mine, this is where we'll be meeting up for the Walk!






Tuesday, March 27, 2007

Sunshine Door Hangers and Websites

Wow, those door hangers sure came fast. Thanks, folks at Burris! Check out "sunshine" below. In natural light it looks very neony, like those extra-bright highlighter markers. I don't think anyone will leave this one hanging on their door for long. We also now have our own website. After shopping web hosting providers, we chose Verizon. For $15 a month, we get our URL - www.becgoteam.com (hey, it wasn't taken) - and fairly easy-to-use web design software. There's nothing on it now; this is just a tease. HA! Check on it later...
Elizabeth





Friday, March 23, 2007

The Creative Process

Those of you who have ever heard me talk about my job know that the documentation I create is bone dry, objective stuff devoid of creative expression. For the past several years it has been my goal to remove all sense of magic from software systems. Normally, I don’t have any sense of writer’s block because the documents I need are what they are, so I just sit down and do it. Weeelllll, things didn’t go so smoothly when I sat down to write up some promo stuff. I now understand why people get paid to do these things.

To follow the model that has served me so well on the job, I asked the Shrivers for samples of what other teams have done to promote themselves and guidelines on what to put in literature that would be made available to the public. So I started toying around with website pages, a newspaper box flyer, hand-made bigger posters for the Giant that Bradley worked at and BNA’s lobby but hadn’t made much headway. Most of all I really wanted to put out doorknob hangers. I say I wanted to do this, not that I did it because I just couldn’t get jump-started. I thought it would help if I had a real piece of paper to doodle on.

OK, all I wanted was to buy some door hanger paper stock that I could put in my home printer and print out a quantity of promo pieces that I can easily distribute in my neighborhood (no newspaper boxes allowed). Bradley walked to school for 5 years, so there’s a good chance people would recognize him if I put a good quality black and white photo on a colorful door hanger. I quickly found out that this was easier said than done. I couldn’t find the doorknob hanger paper stock anywhere, even after searching all the usual suspects online (Staples, Avery, Xerox, finally reduced to Google). Finally, I found this site,

Burris Computer Forms Door Hanger
http://www.pcform.com/doorhanger.asp?gclid=CNaeoITa8YoCFQWMgAodq0nUkQ

which let me fill out a form online to request a sample packet. Suuure. I filled it out skeptically, but lo and behold 4 days later, I had a really nice set of samples in my hands. Looking at them, turning them over, putting them on my own door, the ideas started coming. How to convey a persuasive message in such a small space? I came up with these two first.

In Memory Of
Bradley Rice
-- picture ---
1986-2006
Support Team
Sarcoma 2007
Contact Info

Or, with tongue in cheek...

In Memory Of
Bradley Rice
-- picture ---
You - Tax Break
Us - Hope
Support Team
Sarcoma 2007
Contact Info

After that, it didn’t take long to create good working drafts for a press release, a longer version for a flyer, a layout for the website that includes a link to the sponsor form in .pdf format and Bradley’s story, which Brad will work on too.

Any other virtual team sarcoma folks who see some value in these, feel free to borrow them for your team. Or copywriters looking for some freelance charity work, here’s an opportunity! Drafts to be posted later…..

Sunday, March 18, 2007

On the Road with ACS Road to Recovery

Woo Hoo, I just got a call from the American Cancer Society (ACS) volunteer who does rider/driver coordination for the Road to Recovery Program! I have my first "client". I'll be driving a lady (I'll call her Miss Mary) to weekly chemo starting next Monday. The oncology center she goes to isn't far from my home, so I'll be able to drop her off, talk to the staff to find out how long she'll be there and go home until she's ready to be taken home. Considering how much time I'm used to spending on the road with our commute to DC, this one will be a piece of cake! I'm looking forward to it.

For more info on the ACS Road to Recovery Program:
http://www.cancer.org/docroot/COM/content/div_MidAtlantic/COM_4_2x_Road_to_Recovery_Volunteers_Help_Cancer_Patients.asp?sitearea=

Thursday, March 15, 2007

ESUN Bulletin: An Urgent Call to Action

The following is reproduced in its entirety from the Electronic Sarcoma Update Newsletter (ESUN). To see it with all the proper formatting, you can go to the original:
http://www.liddyshriversarcomainitiative.org/Newsletters/V04N01/editorial.htm

An Urgent Call to Action
Unfortunately, funding at the Federal level in the United States for cancer research and control has been level for the past several years. Contrary to what you may believe, the actual budgeted and allocated funds for the National Cancer Institute (for cancer research) and for the Centers for Disease Control (for cancer control programs) has not increased. To the contrary, when you factor in a 3-5% inflation rate, actually funding has been decreasing by about $150 million per year.

This decrease in funding will undoubtedly have serious effects on a rare cancer like sarcoma. One can easily project that it will be increasingly difficult for sarcoma researchers to obtain funds for basic research in many of the important areas that offer promise today. It will also be increasingly difficult for these researchers and their colleagues to begin or continue the small and large scale clinical trials that are needed to move basic science results into effective treatment protocols. Notice, I use the phrase “to continue.” One can easily project a scenario where decreasing budgets will potentially result in the situation where some clinical trials currently in progress cannot continue because of the lack of funding. This would, of course, have extremely serious consequences for patients and their families and the cancer centers and hospitals involved. There have recently been efforts within the international sarcoma research community to concurrently undertake clinical trials in several nations. Some of these efforts might also be in serious jeopardy if the funding in the United States for sarcoma research continues to decrease. As an example of the disastrous effects of the reductions in cancer research funding, see the sidebar on SWOG, below.

SWOG’s Dilemma: An Example of the Problem
The Southwest Oncology Group (SWOG) is one of the largest cancer clinical trials cooperative groups in the United States. Funded by research grants from the National Cancer Institute (NCI), the Group conducts clinical trials to prevent and treat cancer in adults, and to improve the quality of life for cancer survivors. SWOG is a network of more than 5,000 physicians who work in a variety of medical settings and have a strong interest in bringing innovative cancer treatments to their patients. SWOG trials are conducted by investigators at more than 550 institutions, including 17 of the National Cancer Institute's 61 designated cancer centers. You can read a memo that Dr. Larry Baker, SWOG’s Chair, wrote to the SWOG members in December 2006 about the difficult decisions that SWOG is facing in light of significant reductions in its NCI funding by clicking here. You can easily speculate that similar discussions are underway in cancer research facilities throughout the United Stated.
Additional insights in the severity of the problems induced by reduced cancer research funding are articulated in the article, Prepare and Plan for Financial Constraints on Clinical Trials, which appeared in the January 2007 issue of the Journal of Oncology Practice, Vol. 3, No. 1, pp. 37-38. Click here to view this article.

Unfortunately, the burden for funding sarcoma research is falling increasingly on sarcoma advocacy groups and foundations. Also, some pharmaceutical companies are playing an important role in clinical trial support for some types of sarcomas. In addition to supporting basic research, funds from advocacy groups and foundations have gone to support the development of research infrastructure (e.g., buying equipment, acquiring space, funding tissue banks, hiring lab technicians, and paying indirect and administrative costs) — expenditures that many would argue should be paid for by federal budgets. The importance of sarcoma advocacy groups and foundations, particularly in times of decreasing public funds, cannot be overstressed. We will always have to fend for ourselves if Congress and NIH cannot be influenced to act on our behalf. Just as the efforts of sarcoma advocacy groups and foundations have been producing results in funding sarcoma research and research infrastructure, we as individuals can work on behalf of the sarcoma community in the public arena.

I urge those in the United States who read ESUN to contact their Representatives and Senators and urge them to reverse this downward trend in the funding for the “War on Cancer” and to increase the funding for the National Institutes of Health. Strongly recommend that they explicitly target some of the funding for sarcomas and other rare cancers. This is an urgent issue as the current Congress begins its debates related to the budget. I recommend that you write to your Representative and Senator soon. I am also suggesting that you encourage your family, friends, colleagues and anyone who wants to support research to help find a cure for sarcoma to write such a letter as well.

Click here is obtain your Representatives’ address in the US House of Representatives

Click here to obtain your Senator’s address in the US Senate

A sample letter that you might consider sending follows the end of this editorial. You are encouraged to personalize it to suit your needs.

At best, At worst
Arthur Beckert, Executive Director of the Sarcoma Alliance in reflecting on these issues in the Sarcoma Alliance News (Vol. 5, No. 3) last year said, “If President Bush’s proposed budget passes, opportunities for treating, preventing and eliminating cancer will, at best, hold stagnant. At worst, cancer deaths will begin to rise again. This could have particularly dire consequences for sarcoma research since it already gets such a small piece of the pie.”
For an additional discussion of the impact of the decreased funding see the article, “Funding Concerns Hit Some Cancer Trials”, by Amy Dockser Marcus, Wall Street Journal, February 7, 2007, Page D3.


If we don’t speak out, who will? There is strength in numbers.


Bruce D. Shriver, PhD
Editor-in-Chief, ESUN

[End Note: The above editorial was distributed as an "ESUN Bulletin" last week to the ESUN Notification list because of the urgency of the situation and the upcoming date on which Congress must act on budgets that will affect cancer research and clinical trials in the United States. All agencies under the US Department of Health and Human Services, which includes the National Institutes of Health and, subsequently, the National Cancer Institute, have been operating under a "continuing resolution," which extended the fiscal 2006 budget levels until February 15, 2007 when Congress must either pass the Fiscal Year 2007 budget or extend the resolution. Shortly after the distribution of the editorial it was learned "The budget cutbacks will affect trials for all cancers, but especially those studying sarcomas, and head and neck cancers.The Southwest Oncology Group will halt all sarcoma, and head and neck trials. The Eastern Cooperative Oncology Group will eliminate its brain and sarcoma trials. Many other groups will delay various late stage cancer trials, thus, pushing back possible new treatments for needy patients"; see Federal Funding Constraints Forces Elimination of Cancer Trials.]

Sample Letter

Date

Senator’s/Representative’s address

Dear Senator/Representative X:

RE: Funding to support cancer research

We are turning the “War on Cancer” into an under funded skirmish and jeopardizing our ability to make substantial progress in finding a cure for cancer and to affect the quality of life of the hundreds of thousands of families dealing with cancer.

I am very concerned about the dire effects on basic cancer research and clinical trials given the level of funding for cancer research that Congress has targeted for NIH over the last several years. I urge you and your colleagues to work to increase funding for cancer research in general and to specifically earmark a portion of these funds for sarcomas and other rare cancers.

I am particularly concerned about the urgent situation facing biomedical research in the United States due to inadequate funding and strongly recommend that you actively sponsor and support legislation to protect the nation’s biomedical research program by significantly increasing funds to NIH. Please act now to support a significant increase in funding for cancer research in Fiscal Year 2007 and beyond until this disease is conquered.

Sincerely yours,

Name
Address

Lasagne for the House

Today I talked to the volunteer coordinator at the Ronald McDonald House and I'm on to bring lasagne's for their freezers next Tuesday. I'll bake 3 pans worth, divide it into individual serving containers and freeze it at home. I've got labels to go on each container that list the ingredients to help people with allergies or restricted diets figure out if they can eat it or not. I'll also bring magnets and colored notecards to put on the fridge doors letting people know the lasagne is there ("Missed meal? Need a midnight snack? Help yourself to lasagne in the freezer!"). See, the problem with having a sick child is that mealtime becomes whenever you find time to eat a meal. That might not coincide with the time dinners are served (cooked and served by volunteers) at the House or anywhere else nearby. Brad and I spent many a night trying to find something resembling a healthy meal within walking distance of UMMC - not fast food, but not resort hotel fare either - and after hours it just doesn't exist. If a little homemade food boosts one family's spirits for one evening, my mission is accomplished!

Today I'm also starting to work on Bradley's story. In the past couple of weeks, I got all excited and gung-ho about creating some flyers, doorknob hangers and stuff for Team Sarcoma, but couldn't quite get my writing hand going to come up with a design and the right language. Then I realized that I can't create this promo stuff without re-connecting with our experience and reminding myself of our motivation - that no one should have to go through this as we did with so few options, that the current treatments are so barbaric and it's criminal that the federal government has cut funding to NIH/NCI so much that sarcoma research would grind to a halt without private funding. Yep, that oughta get the words flowing! I'll get it started with the factual chronology, then Brad and I will add our personal notes to fill it out.

Monday, March 12, 2007

Goals


One whopping week into the sabbatical and I'm already antsy about setting and meeting goals. This weekend, over wine and guacamole dip with friends, I contemplated the meaning of goals, exactly what my short and long-term goals are, how to divide bigger projects into smaller tasks, on and on ad nauseum. Thank goodness for good friends like the Shoemakers and my wonderful husband who advised concentrating on weekly goals rather than how to use every minute of every day. As if the universe agreed, the next morning I opened the Washington Post Magazine to this Dilbert. There's perspective for you! Now to plan my weekly goals......


Friday, March 9, 2007

Sponsor and Donation Form: Liddy Shriver Sarcoma Initiative/Bradley

Here is our team's Sponsor and Donation Form! Double-click the image for a larger view and to print it out. If you want a copy of this form in Word or PDF, send me an e-mail at egr2058@yahoo.com and I'll send it to you. All donations made using the notation "Liddy Shriver Sarcoma Initiative/Bradley" on the memo line of the check will be credited towards a research grant that will be made in his memory. It would be wonderful if the research project funded in Bradley's memory were to result in a breakthrough leading to a cure for this horrible disease. That's what we're shooting for! Next I'll be working on some promo pieces that can be posted in grocery stores, community centers, doctor's offices, wherever we can find a piece of public bulletin board space. Look for that in the next couple of weeks!

Research Grants to be made in Bradley's Memory

In my latest conversation with Bruce Shriver, he explained that the grants funded through our efforts will be made in Bradley's name. This means that when a cancer research facility receives a research grant that has been funded using the money we raise (as denoted by a memo line of the checks reading "Liddy Shriver Sarcoma Initiative/Bradley"), the doctors involved will know that this funding came from the hearts of those of us who knew and loved Bradley Paul Rice. The thought brought tears to my eyes. Here is a sample of how past grants have been awarded in this way:

The following is quoted from The Liddy Shriver Sarcoma Initiative website
http://www.sarcomahelp.org/Funded%20Research/funded_research.htm

December 2006 — The Liddy Shriver Sarcoma Initiative is pleased to announce the funding of two research projects at the Huntsman Cancer Institute at the University of Utah. The two grants, totaling $50,000, are being made in memory of Liddy Shriver, Brian Morden, Krystle Smith, Shane Duffy, Conor O'Sullivan, Paul Onvlee, and Allen Strehlow and to honor those currently fighting this disease. Both of the studies will be directed by Stephen Lessnick, M.D., Ph.D. at the Huntsman Cancer Institute. The ultimate goal of the first study, “New Approaches for EWS/ETS Detection in Ewing’s Sarcoma” is to improve physicians’ abilities to provide an accurate diagnosis of Ewing’s sarcoma to patients, to provide physicians’ with molecular data which may be relevant to prognosis, and to provide a new non-invasive assay for the measurement of treatment response. The goal of the second study, “Analysis of NR0B1 in Ewing’s sarcoma” is to help to characterize the molecular mechanisms involved in Ewing’s sarcoma development. Additionally, by fully understanding these mechanisms, Dr. Lessnick and his team hope to identify new therapeutic approaches for patients with this devastating disease. These grants were made possible because a number of people worked very hard in obtaining donations to sponsor much needed sarcoma research.

Wednesday, March 7, 2007

Our First Sponsor?

Good news! One of Team Sarcoma 2007 has a connection to a local newspaper in Frederick as well as a restaurant in Columbia! Yahoo! I'm looking at some free event promotion here! Today I'll be putting together ideas for flyers, door hangers, small posters and perhaps a bit of a website. Any artists out there? Printed materials may have to be black and white to keep costs down, so I could use some advice on what looks good in B&W. Pretty good progress for the first 3 days, I'd say! Cheers and a good day to all.

Tuesday, March 6, 2007

Getting Organized

The first order of business this week was to set up my project workspace. For this, I chose the dining room table. Over the past 2 years, our dining room table has served as a safe haven, out of reach of our ADORABLE grandson, Noah now 2 1/2 years old. It’s been the place we've put photos pulled out from albums in the hutch, momentos from vacations, school work and any other fragile item for which there is no obvious good spot in the house. That put the remote control helicopters right next to my mother’s old English bone china potpourri pot, just recently handed down as my folks are downsizing. Noah is now fully capable of pulling out a chair and helping himself to whatever is on the table, so the timing is right to dig in and find homes for everything in those piles.

Here are the before and after photo’s of this effort. Sorry the helicopters were apparently skimmed off the top of the pile before the first picture was taken.