Welcome to NA News Issue 18
Welcome to issue 18 of NA News, where we keep you up-to-date with the latest information on research, patients, fundraising and other issues important to the neuroacanthocytosis community. In this issue, patients diagnosed with McLeod syndrome who are not currently on medication are urged to help with a Harvard Medical School study supported by the Advocacy. We also introduce our new trustee, Dr. Sheila Peskett, and bring you up-to-date on NA fundraisers – including the upcoming BigGive, where NA research needs your help more than ever to raise crucial funds. Please also see our brand-new website which makes it easier for you to connect with our community in your own language. Visit www.naadvocacy.org
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Calling McLeod's syndrome patients
Can you assist a Harvard Medical School researcher with her current investigations into McLeod’s syndrome? Alicia Rivera PhD at Boston Children’s Hospital, Harvard Medical School, is currently conducting the study, The role of XK protein in Erythrocyte ion transport function.
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Upcoming NA symposium focuses on information sharing with patient groups
The upcoming NA symposium, set for 26-27 October 2012, aims to unite scientists from a number of fields as well as to give patients and their families a chance to meet and speak with researchers. Families are invited to attend free of charge a round-table discussion Saturday afternoon on "patient organizations and their role in EU funded projects."
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Visit the brand-new NA Advocacy website
Following significant development work, we've improved the NA Advocacy website www.naadvocacy.org with new features and enhancements that make it easier for our community to interact, including language translation services.
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New Research Grants announced by the Advocacy for NA Patients
The search for the elusive role of chorein (VPS13A), the protein that is missing from patients with ChAc, has been redoubled with a grant by the Advocacy to Dr. Antonio Velayos Baeza, co-head of the Monaco Group at the Wellcome Centre for Human Genetics, who has contributed to chorea acanthocytosis research for 10 years.
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Advocacy announces new trustee Dr. Sheila Peskett
The Advocacy for NA Patients is delighted to announce the appointment of Dr Sheila Peskett MA FRCP as trustee. Sheila is Group Medical Director for Ramsay Health Care UK and a Senior Medical Panel Member for the Tribunals Service.
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Support the BigGive, a vital source of research funds for NA
Can you support the BigGive for NA research this year? This year the on-line campaign is from December 6-19th, and each year the Big Give plays a major role in helping fund the research activities we undertake at the Advocacy, including the grant awards you see announced in NA News. If you are able to donate on-line, look for details in the next NA News, or if you would rather send a cheque/check, please contact Glenn Irvine to become a pledger.
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FUNDRAISING UPDATE
This year has seen much fundraising activity in support of NA Research. The Advocacy was thrilled to have a runner in the London Marathon in April, David Lewis, while May 6th just outside Edinburgh brought together local Scots and over 350 plants for sale, organised and managed by Sheila and Ralph Averbuch. As summer began, Fergus and Anna Cumming and Sophia Berry tackled 71 miles from Carlisle Castle to Hadrian's Wall. Card sales from Fiona Fleming and Gil and Gordon Parry's annual walk in North Wales have also made important contributions.
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IN MEMORIAM: Pamela Korb
We are very sad to report the death of NA patient Pamela Korb. Pamela lived with her parents, Heidi and Willi in Erfurt, a city that was reunited with western Germany in 1989. She was an active and enthusiastic person who played field hockey and loved to swim, shop, go for walks, ride her bicycle (later a Rollator-walking frame) and to talk with her many friends. She enjoyed her meals, especially when they ended with a sweet dessert.
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PATIENT UPDATE
Updates this issue from Susan Hills in northern England, Kim Sonnet in Colac Australia and Alex Irvine in London. If you're an NA patient and wish to contact other patients, visit the new NA website and the Patient Centre which allows visitors to register and meet others.
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What readers said about the NA News Special Patient Edition
Thank you to everyone for their kind comments on our recent special edition of NA News devoted to patients. We've published a selection of the comments you sent us. Do you have comments or insights about NA News? Don't hesitate to contact Ginger at ginger@naadvocacy.org
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