Harry's Hope Campaign wins fight for Narcolepsy Treatment

Australian mother Tracy White has been on an emotional roller-coaster since January 2011. Her son Harrison, now 7, suffered an Acquired Brain Injury in Jan 2011 after developing Meningoencephalitis. As a result Harrison was left with multiple problems:

Narcolepsy is a sleep disorder that causes excessive sleepiness and frequent daytime sleep attacks.

Narcolepsy is a sleep disorder that causes excessive sleepiness and frequent daytime sleep attacks.

Severe acquired brain injury
Mild intellectual disability
Fine/Gross motor delay
Severe speech and language disorder
Epilepsy, and
Narcolepsy with Partial Cataplexy secondary to his brain injury. 

Research suggests persons with brain injuries incur a higher rate of addiction, therefore, feeding amphetamines (which is the first line treatment for Narcolepsy)  to a 6 year old across his lifetime had the potential not only to create addiction but cause long term damage to his body, as well as disrupt his epilepsy, so this is not a suitable option for a first line medication!

A more suitable medicine, Modavigil (Modafinil), was prescribed but at initial doses 200mg/day equated to $170 per 30 days, or $2068 per year which will increase to approx $4136 per year at the standard recommended dose of 400mg/day. In total this across his lifetime (approx 78 years given the average lifespan of an Australian Male) could mean an expense of nearly $300 000!

Unfortunately, the Australian Pharmaceutical Benefits Scheme denied access to the drug for Tracy's son, so Tracy with her husband, found themselves in a very difficult financial position. 

The couple decided to campaign with the GoPetition website and started a petition for their cause to get Modavigil (Modafinil) placed on the Australian Pharmaceutical Benefits Scheme.

Thankfully, Tracy was soon after able to report that, "We were SUCCESSFUL! It is through determination and your unwavering support that such a result was possible, thank you all!"

Tracy has now thanked her supporters publicly, "A sincere thanks to all who supported my son and family in gaining access to Modavigil on the PBS as a first line treatment for Narcolepsy."

Hopefully, Tracy's efforts and campaign will also benefit hundreds of other needy children in Australia.

Petitions and the current social mood of the USA

Petitions are windows into prevailing social and economic conditions.

The flow of petitions through a site like GoPetition, while airing complaints of a wide variety, is also a measure of the flow of social mood. In the United States, for example, recent social mood has been unusually depressed. Petitions protesting mass shootings and debating gun control can be juxtaposed against widespread economic problems and political frustration.

To capture the extreme social mood prevailing in the USA, one would need to find some petitions of an "extreme" nature. The secession petitions offer a window into desperation. Secessionists from Kentucky, Texas, and South Carolina have all expressed their exasperation with US politics. Clemond Griffin II sums up the feeling of many, "I feel that our voices as citizens of the United States of America have fallen on deaf ears, and that the state of the union is in a downward spiral... if New Hampshire and other such states described within, secede from the United States of America, then South Carolina should as well." 

But it's not just frustration with politics that represents the prevailing mood. Economic conditions are also dire. This is reflected with calls to abolish the US Federal Reserve and reform household names like Fannie Mae and Freddie Mac. 

Many homeowners are simply fed up with Fannie Mae & Freddie Mac. One homeowner, Carrie Mateos is taking action. She claims that Fannie & Freddie are simply burying homeowners further and further underwater while, at least in Florida, the courts have been bogged down with foreclosures some taking over 3 years. This has driven down property values in many neighborhoods.

Mateos claims she is just trying to help herself and millions of Americans having to deal with Fannie Mae & Freddie not allowing principal reductions. These Americans are losing their homes. She laments, "I mean  why would they offer a homeowner the option to short sell at fair market value versus offering them a loan modification at fair market value."

Of course the social and economic hardhsips mentioned above are dwarfed by the personal tragedies of the recent spate of shootings in the US. Many petitions have called for gun control while others claim that the solution against violence is to arm teachers and uphold the constitutional rights of Americans to have and hold as many guns as they like. In the meantime, a campaign to release the toxicology report of the Sandy Hook shooter sums up a focus in America on tragedy itself.

While there are many other petitions at GoPetition of a positive nature, and a number of success stories, there is an underlying trend of exasperation felt by many Americans about their social environment and living conditions.

Posted by John Pope for GoPetition

GoPetition outlines services for Groups, Businesses and Organizations

GoPetition has been developing leading campaign software for individuals, groups, businesses and organizations for over a decade. Currently, our client base ranges from individuals seeking micro change for local causes, to organizations and government authorities seeking macro change regarding important social concerns.

In 2010, leading Internet consultancy firm e8 Consulting recommended GoPetition to the Australian Federal Government as a Web 2.0 best practice example. Since that time, GoPetition has been working hard to maintain and develop best practice standards to supply leading applications to both individuals and organizations, including NGOs and government authorities.

GoPetition's membership base includes and targets NGOs which have a variety of orientations:

  • Charitable organizations
  • Service groups
  • Participatory orgs
  • Professional associations
  • Campaign groups
  • Groups empowering social objectives

Our NGO clients also vary by level of geographical focus, including the following:

  • Community-based organizations
  • City-wide organizations
  • National NGOs
  • International NGOs

Group Services: The core mission of GoPetition is to help our members reach campaign objectives with leading petition tools and applications. Beyond our core application services, GoPetition provides a way for organizations to build their support base though our featured campaigns program and social networking tools. We allow campaigners to organically attract traffic and grow their membership at the same time. With this approach, our cost-per-acquisition for new supporters is the most competitive in the market. Dedicated case management support is also provided to all client organizations and is designed to help clients reach campaign objectives quickly and cost-effectively.

GoPetition has also recently established a program for charities which is designed to advance charitable objectives and causes with our custom-built software and case management services. Charities, if registered, are offered significant additional support free of charge.

GoPetition invites groups and organizations to join our growing membership base. Every day people who start petitions with GoPetition reach meaningful objectives with our easy-to-use and powerful grassroots campaigning tools. Millions of people have taken action on the GoPetition site, and benefited from our platform.

For more information about how GoPetition can help you with your cause please contact us.