Even though Bill has been gone for several years, I continue to receive information regarding clinical trials. In the past, I've discarded the notices....I don't need them. However, I thought it might be useful to post the information here.
Department of Neurology @ Emory University School of Medicine
"...We will be starting a clinical trial of a drug called arimoclomol (pronounced ari-mok-low-mole) for people with rapidly progressive forms of ALS caused by mutations in the SOD1 gene. " "If the genetic cause of ALS in your family is unknown, then we'd like to encourage you to contact us so that we can find out if the SOD1 gene is the cause. Please contact Cathy Raiser, study coordinator at craiser@emory.edu or (404) 712-8578." "If you have ALS and we can establish that a change in the SOD1 gene is the cause of ALS in your family, then you may be eligible to participate in this clinical trial. "
Michael Benatar MBChB,DPhil
Assistant Professor of Neurology and Epidemiology
Emory University
There are a number of links to clinical trial sites. Here are a few I've found. Please feel free to add to the list.
http://www.alsa.org/patient/drug.cfm
http://alsindependence.com/ALS_Clinical_Trials.htm
http://alstrials.ucsd.edu/
http://www.als.net/research/studies/publishedClinicalTrialList.asp
Wednesday, May 6, 2009
Monday, May 4, 2009
Advocacy Toolkit
In a previous post, I presented an overview of the tools available on the Public Policy Page of the National ALSA website. This post is designed to make you more familiar with the options on the Elected Officials tab. Practice using the tools by sending a thank you letter to your State Legislators for their work to pass the CA State Income Tax Check-off and ALS Registry bills this year! Just give a brief overview of your story and why the passage of these bills is important to you. Helpful hint: It’s easy to compose a letter in your normal word processing program (i.e. Microsoft WORD) and then use the Copy/Paste function to add the text to the online/web form.
Step by Step
Before you start, you will need your Zip +4 code. Launch your web browser and access the Public Policy Advocacy Action Center using the link: http://capwiz.com/alsa/home
Click the Elected Officials tab.
Enter your Zip +4 Code in the search criteria boxes. Click the radio button marked STATE and click GO. The system will present a list of the elected officials who represent you.
Click the name link and the system will present an overview of the selected legislator with links to their official web page.
Alternatively, you can also use the tools provided by the State of California to locate your local legislator. Click the link: http://www.leginfo.ca.gov/cgi-bin/memberinfo
Enter your zip +4 in the search box and click search. The system will provide a list of your State representatives.
Click the name link to be taken to the official web page for each legislator.
Click the Contact Me link.
Complete the information requested.
Step by Step
Before you start, you will need your Zip +4 code. Launch your web browser and access the Public Policy Advocacy Action Center using the link: http://capwiz.com/alsa/home
Click the Elected Officials tab.Enter your Zip +4 Code in the search criteria boxes. Click the radio button marked STATE and click GO. The system will present a list of the elected officials who represent you.
Click the name link and the system will present an overview of the selected legislator with links to their official web page. Click the View button located next to the Issues & Legislation section and the system will display a number of options, including a link to tips & protocol when writing to legislators.
Alternatively, you can also use the tools provided by the State of California to locate your local legislator. Click the link: http://www.leginfo.ca.gov/cgi-bin/memberinfoEnter your zip +4 in the search box and click search. The system will provide a list of your State representatives.
Click the name link to be taken to the official web page for each legislator.
Click the Contact Me link.
Complete the information requested.Click Submit.
Be informed – subscribe to e-news from your legislator. Learn about town hall meetings, new legislation, community events and more. Visit their website and sign up today.
Be informed – subscribe to e-news from your legislator. Learn about town hall meetings, new legislation, community events and more. Visit their website and sign up today.
NEW…VA Benefits Online Resource
Newly launched, ALSA National has created a new section on their website, targeted specifically to our military veterans and their surviving spouses. Designed to help veterans understand and apply for the benefits they are entitled to, the site includes important resources for vets with ALS, their families and survivors, such as answers to frequently asked questions about the new VA regulations for ALS and a link to our Roll Call of Veterans. Please share this information and encourage all vets to join the Roll Call of Veterans. Non-veterans also can become ALS Advocates via the site and receive the tools and information they need to help us fight for veterans and all people with ALS.
--Veterans Page: http://www.alsa.org/policy/veterans.cfm
--Benefit Information & Eligibility: http://www.alsa.org/policy/article.cfm?id=1358
--Applying for VA benefits: http://www.alsa.org/policy/article.cfm?id=1357
--Veterans Page: http://www.alsa.org/policy/veterans.cfm
--Benefit Information & Eligibility: http://www.alsa.org/policy/article.cfm?id=1358
--Applying for VA benefits: http://www.alsa.org/policy/article.cfm?id=1357
You’ve signed up to be an advocate…now what?!
You went to the Public Policy Advocacy Action Center –http://capwiz.com/alsa/home/ and registered with ALSA National to become an ALS Advocate. THANK YOU! You have taken the first step to making a difference for patients and families living with ALS. The next step is to get familiar with the Public Policy Page and some of the great tools available to us on the ALSA.org website. Here is a quick overview of the page – I’ll cover individual tools in future posts.
There is much more content, but this is the “meat” of the home page.
The Elected Officials tab allow you to find your elected officials, including members of Congress, governors, state legislators, local officials, and more. Enter your Zip +4 Code, select your search criteria and click GO.
The Issues & Legislation tab allows you to learn about key legislative priorities and send email messages to your legislators.
The Media Guide tab provides a comprehensive listing of the newspapers, TV stations, and other media organizations which cover your zip code.
The resulting media list allows you to send an email message directly to the key contact at up to 5 media organizations. This is just a partial listing for the 94547 (my hometown) zip code!
There is much more content, but this is the “meat” of the home page.
The Elected Officials tab allow you to find your elected officials, including members of Congress, governors, state legislators, local officials, and more. Enter your Zip +4 Code, select your search criteria and click GO. 
The Issues & Legislation tab allows you to learn about key legislative priorities and send email messages to your legislators.
The Media Guide tab provides a comprehensive listing of the newspapers, TV stations, and other media organizations which cover your zip code.
The resulting media list allows you to send an email message directly to the key contact at up to 5 media organizations. This is just a partial listing for the 94547 (my hometown) zip code!I’ve found the site to be very user friendly. So…logon and take a look around!
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:
-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.
-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!
-Share links to research, interviews, stories, events, clinical trials
-Post encouraging messagesPromote local events to raise ALS awareness by participating and sending event invites to your friends.
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*]
-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!
-Pick your ride: http://www.ridetodefeatals.com/Pick_your_ride.html
-Use the online tools to raise money for research and patient programs.
-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:
-ALSA: http://www.alsa.org/als/what.cfm?CFID=3127178&CFTOKEN=6299aa0f7dad5592-E96C37F7-188B-2E62-80C54B5B86E267D5
-Whatisals.com: http://www.whatisals.com/
-Educate your friends, family, co-workers, everyone in your personal community. Get them involved!
POPUL[ATE*]
-Share links to research, interviews, stories, events, clinical trials
-Post encouraging messages
[*ATE] – ALS…Together it Ends
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