School was NEVER this much fun!

I'm a student again!!!  I've returned to a learning mode, working to learn the craft of blogging.  In the past few weeks, I've read a number of blogs and have stumbled onto some great practical resources. One of them is pro-blogger.net. On July 15th, Darren Rouse, the author of pro-blogger.net posted a challenge to his readers to take part in the 7 Link challenge.  The idea is to publish a post a list of seven links to posts that you and others have written that respond to the seven questions listed below. This sounded like a lot of fun.  

So, while it's a little after the fact, here is my entry for Darren's challenge:

• Your first post: Shift F10
  
• A post you enjoyed writing the most: Aftermarket add-ons for your wheelchair
• A post which had a great discussion: 100 things...leading to a single choice 
• A post on someone else's blog that you wish you'd written:  How to pissed off the fatally ill written by the fabulous Carla Zilbersmith, who lost her battle with ALS earlier this year. 
• Your most helpful post: Project Gift Box - Organizing Yourself
• A post with the title that you are especially proud of: Hey Papa....I'm doin' OK! 
• A post that you wish more people had read: I had a tie here! Kids and ALS and Why Does Fundraising for ALS Matter...Really?

This was a fun challenge to complete! I urge you to check out some of the posts, then head over to Darren's site to check out other entries.   If you are a fellow blogger, consider sharing your entry with me and I'll check out as many as I can.  If you enjoyed this post, please leave a comment or become a subscriber. 

Thanks for reading!

Calendar Girls (and Guys!) for ALS

Carla Zilbersmith is extraordinary. And...she has a great idea!  I am posting this to help her find the 11 patients she is looking for!  Please contact Carla directly if you are game to join her!

TO FELLOW ALS PATIENTS:

My name is Carla Zilbersmith and I was diagnosed with ALS in December of 2007. I have been thinking about something I would like to do to both raise awareness and raise funds for ALS research but I need the help of 11 other bold people with ALS.

I would like to create a cheesecake calendar using ALS patients as models. I’ve seen calendars like this to raise money for cancer but they have always used friends and family members instead of the actual people living with the disease. I don’t know about you, but I don’t like to be marginalized because of the fact that I’m in a wheelchair or that I slur my speech a little. I feel like I’m the same person inside and I am forever looking for ways to remind people of that fact.

Here’s what will happen: If you’re even remotely interested in participating in this project, you will email me at carlazilbersmith@yahoo.com with your questions as well as any concerns that you might have. I will arrange for a photographer or photographers to take our pictures and wrangle someone to help with hair, make-up, and clothing (Obviously, men won’t need make-up and bald people won’t need hair styling). The photo shoot should take no more than 2 hours of your time including make-up. None of the pictures will involve nudity but they will be provocative. You don’t have to consider yourself “hot” to participate and ideally people at all stages of the disease from not even needing a cane to using a ventilator will be part of this. I want to show the world that we are more than a disease. I have been in the entertainment business for over 20 years and I know what I’m doing, so you can trust me when I say I promise you will not be embarrassed by the picture we choose and you will not have any pictures taken that you aren’t comfortable with.

I will find a printer and a graphic artist to donate their time to creating the calendar, which ideally should be ready by Thanksgiving so absolutely everyone can buy several as Christmas/Hanukah/Kwaanza presents.

I hope you will consider being a part of this project. We won’t raise millions of dollars but we will cause a stir, make some money, and let people know that we are alive and kicking until we’re dead. Thanks for your consideration.

Carla Zilbersmith

ADVOCACY 101

What is an advocate? (Webster’s) One that supports or promotes the interests of another

What is ALS Advocacy? The support and promotion of ALS related interests, more specifically research, health & long-term care and caregiver support, at all levels (National, State, Local) of elected government. ALSA advocates work to effectively lobby Congress, the White House, and related national organizations, as well as state and federal agencies for funding and support of programs which will benefit PALS and their families. The true strength of the advocacy network is the dedication of the many individuals affected in some way by ALS. Individuals who have made the decision to make a difference today, so that the future can be brighter for PALS and their families.

Why is it important? Joining together to raise our voices on behalf of PALS, we have been able to accomplish the following:

• Presumptive Disability (and accompanying benefits) for Veterans
• Passage of the ALS Registry Bill
• Passage of the 24-month Medicare waiver for ALS patients and the presumptive disability ruling from the Social Security Administration.
• Increased federal funding for ALS research at the NIH
• Federal funding for ALS research through the Department of Defense
  

Who can be an advocate? Anyone with a commitment to help current and future generations affected by this horrific disease. Anyone willing to raise their voice or write a letter to an elected official. Anyone willing to make a difference. You!

As an advocate, what do you do?
ADVOC[ATE*]

• Join in (or start !) a social networking discussion
• Join the “Advocates for ALS” group on Facebook
• Sign up: http://www.facebook.com/home.php?ref=home#/group.php?gid=46567667530&ref=ts
• Become a Greater Bay Area Chapter Facebook FAN
• Sign up: http://www.facebook.com/home.php#/pages/San-Francisco-CA/ALS-Association-Greater-Bay-Area-Chapter/7265231215?ref=ts
• Join the “ALS Association-Greater Bay Area Chapter” group on LinkedIn
• Sign up: http://www.linkedin.com/groups?gid=1723587
• Join the ALSA advocacy team.
• Sign up at http://capwiz.com/alsa/mlm/signup/

PARTICIP[ATE*]

• Sign up, lace up your sneakers and walk in a Walk to Defeat ALS.
  -Find a walk:

http://web.alsa.org/site/PageServer?pagename=WLK_BP_CA_eventlist
-Use the online tools to raise money for research and patient programs. It’s easy and fun!

Sign up, don your padded shorts and ride your bike to Defeat ALS.
-Pick your ride: http://www.ridetodefeatals.com/Pick_your_ride.html
-Use the online tools to raise money for research and patient programs.

Sign up and volunteer for one of the many chapter events/projects.
-Register today: http://webba.alsa.org/site/PageServer?pagename=BA_volunteer
-There are LOTS of opportunities! We can find a job to suit your skills and time commitment.

EDUC[ATE*]

• Learn the answers to FAQs
  -Wikipedia:

http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis
-ALSA: http://www.alsa.org/als/what.cfm?CFID=3127178&CFTOKEN=6299aa0f7dad5592-E96C37F7-188B-2E62-80C54B5B86E267D5
-Whatisals.com: http://www.whatisals.com/

Speak up and speak out.
-Educate your friends, family, co-workers, everyone in your personal community. Get them involved!

POPUL[ATE*]

• Update your social networking sites (i.e. Facebook, LinkedIn, Twitter) on a regular basis.
  -Share links to research, interviews, stories, events, clinical trials
  -Post encouraging messages
• Promote local events to raise ALS awareness by participating and sending event invites to your friends.

[*ATE] – ALS…Together it Ends