Call for NA Research Grant Proposals 2011
The Advocacy will send the Call for NA Research Grant Proposals 2011
later this year. This will be our third round of research funding
investment and we expect it will offer total seed money of $150,000. We also accept funding proposals on a rolling basis and encourage any researchers in basal ganglia neurodegeneration to contact the Advocacy for NA Patients.
Amid sadness and grief, clarity
Speaking to people you love about preparations for after their death is never easy. But Ann Lippincott explains how a brief chat about brain tissue donation with her daughter ultimately made all the difference in coping with the grief of Marika's death.
Practical arrangements for brain tissue donation
Led by Dr. Benedikt Bader, the neuroacanthocytosis research team based
in Germany is ready to give practical guidance to your doctor if your
family should decide to donate brain tissue for research after death.
Blood samples urgently needed for Vienna research
Thank you to more than a dozen patients who have donated blood in
support of the EMINA research project. But researchers on the project, which
is being led by Dr. Claudia Roos conducted at the Medical University of
Vienna, urgently require additional donations. Can you help?
Ten ways you can act now to bring a cure for NA closer
Patients and families affected by by NA diseases often experience overwhelming feelings of helplessness when first diagnosed with neuroacanthocytosis. But even though we are still learning about the disease and potential therapies, there's action you can take right now to fight the disease if you're diagnosed -- and you can start today.
New resources for NA patients and caregivers
In addition to the resources that we always show in the front page
margin of NA News, here are several new information sources you may
find valuable. Many are aimed at caregivers, including a helpful guide to safe swallowing.
In this issue we meet Elba Nidia Figueros Nieves, who lives
with her husband Juan Carlos Santiago and three children in Puerto Rico, and Froukje
Vlietstra of The Netherlands. We also catch up with Pete Clark for the latest update on his progress with botulinum Toxin injections.
We are sad to report the death of two NA patients earlier this year, Tim Hayes of Minnesota and Maria Isabel Aparisi of Spain, as well as the death in 2009 of Pete Ball's sister Denise Ball in the UK.
Read the latest news about research into neuroacanthocytosis, including the European Multidisciplinary Initiative on Neuroacanthocytosis projects; Purification and biochemical function of yeast Vps13 protein at the University of Michigan; and In vitro modelling of Chorea-acanthocytosis at the Technical
University of Dresden.
A sincere thank you to everyone who helped make this year's Big Give campaign such a success. The on-line donations made to the Big Give campaign in December 2010 were matched with STG£5,000, and this month we were delighted that the Parry's annual Great Hawarden Trek for NA and Epilepsy offered further support towards NA research.