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Archive for September 2008 – Page 2

Fighting Back Podcast #17 – Fighter Mom Friday Audio (Steve Eichenauer)

Posted: September 4th, 2008 | By: Staff | 1 Commnt
Thursday, September 4th, 2008

fighting-back-17-080904.mp3
This is the last in a series of four Fighting Back Podcast episodes that feature audio from the Fighter Mom Friday event, held on May 9, 2008 in New York City.  The workshop was designed to educate, inform, and inspire attendees fighting against diseases or conditions affecting their children. The day-long event featured a number of speakers, and several of them have agreed to allow us to present in podcast form the information they offered during the event.

Episode 17 features a seminar from Steve Eichenauer, a partner at lobbying firm Public Strategies Washington.  He discusses how Fighter Moms can talk to their legislative representatives to raise awareness of their cause and attempt to increase funding.

Note: Mr. Eichenauer refers during his talk to a one page information sheet that he handed out during the seminar.  That information sheet is available for download in .pdf format Fighter Mom Multimedia page.

More information on Fighter Mom Friday can be found on the Fighter Mom website.  More audio from the event is available on the Fighter Mom Multimedia page, or by subscribing to this podcast.

To listen to this episode, you can use the Flash mp3 player above, load the Fighting Back Podcast Feed into your favorite feed reader, subscribe via iTunes or other podcast directories, or simply use the download link above to load the file onto your computer.

If you have feedback, a comment or question, or are interested in having Fighting Back tell your story, please contact us via the Fight SMA contact page. You can also leave a message in the form of a comment on this blog as well.

Comments (1)
Categories : Podcasts

New website to help families understand clinical trials

Posted: September 2nd, 2008 | By: Staff | No Comments
Tuesday, September 2nd, 2008

A new website has been launched to, in the words of NINDS’s Dr. John Porter, “help parents understand the how-when-where-why of clinical studies and clinical trials in their children.” While not a spinal muscular atrophy (SMA) specific site, the videos and articles address many of the concerns that parents have when considering enrolling their child in a clinical trial, including SMA trials. Topics include “Importance of Research In Kids,” “Safety and Protections,” “Questions You Should Consider Asking,” and “Effects on the Family.”

The site was developed and made possible by the support of: National Heart Lung and Blood Institute (NHLBI), NIH, National Institute of Child Health and Human Development (NICHD), Best Pharmaceuticals for Children Act (BPCA), National Marfan Foundation (NMF), National Center for Research Resources (NCRR), NIH, and Gerber Foundation.

Check out the website by visiting: www.ChildrenAndClinicalStudies.nhlbi.nih.gov.

Comments (0)
Categories : General Information, Spinal Muscular Atrophy News Stories, Spinal Muscular Atrophy Science and Research

SMA Community Rallies Around AmEx Members Project Entry

Posted: September 2nd, 2008 | By: Staff | No Comments
Tuesday, September 2nd, 2008

After blasting the internet and email with calls for support, the entire SMA Community is waiting to learn if the Advisory Panel for the American Express Members Project will select the fight to cure spinal muscular atrophy (SMA) to move to the next round of the competition.

In its second year, the Members Project is an online program that encourages American Express cardholders to submit ideas for “innovative projects that could make a difference in the world.” The Project’s Advisory Panel will select 25 projects from those submitted and cardholders will vote for their favorites. In the end, American Express will provide $2.5 million in funding for the top five projects.

As of this morning, the project Cure SMA was listed as #25 on the overall list of “Most Nominated Projects,” receiving 2072 nominations. According to the website, “American Express is looking for projects that are achievable, innovative, and stand to have a positive impact that touches the lives of people in a significant way.” Finding a cure for SMA fits these requirements. With proper funding, SMA researchers believe that a treatment and a cure may only be years away. The science is cutting-edge and it is the position of the National Institute of Neurological Disorders and Stroke that the research “would have implications for other diseases.” And, defeating the number-one genetic killer of infants would certainly touch many, many lives.

The nominating period has ended, but AmEx cardholders and non-cardholders can still show support on the Members Project message boards. The list of 25 projects to be voted upon will the announced September 9th.

Comments (0)
Categories : Spinal Muscular Atrophy News Stories
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