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Information News - AADC Trust Expenditure
8 October 2007

The three main aims of the Trust are to fund research, support affected families and raise awareness.

Amount Raised: May 2006 to October 2007
£114,000

Funding Research

Approved £89,000 Grant for a 3 year AADC PhD Studentship. George Allen was awarded the Studentship and commenced AADC research on the 1st October 2007 (see front page news story)

Approved £14,000 (50%) funding for a new HPLC System.  The balance was funded by University College London in support of our investment of a PhD student.  The equipment will be used solely for AADC Research and for diagnosing AADC. (news story to follow)

Approved £2,500 Grant for Professor Hoffman in Germany for Phase 2 of his AADC Treatment Study.  This will allow him and Co-applicant, Dr. Claudia Manegold, to travel to affected families outside Germany, including visiting the UK and seeing 4 AADC children and their families in February 2008.  They will then travel to Italy, Malaysia, Taiwan and maybe USA.  The Study will be completed by 2009 and will hopefully bring about new improvements to the treatments being used for the disease.

Approved £3,000 Meeting Expenses. Our Medical and Scientific Advisory Members will meet in the UK on 22nd February 2008 to discuss all aspects AADC Research. Expenses include flights and accommodation from Professionals travelling from USA, Greece, Switzerland and Germany, plus overnight accommodation for the UK Professionals who will be attending.

Supporting Families

Approved £2,500 Family Grant (for accommodation and translation services)
In addition to our Research Projects and in support of one of our affected families, the Trust approved a £2500 Family Grant in August 2007.

An AADC Family travelled to the UK for a two-week block of Bobath Center Intense Therapy.  This is part of an ongoing Charity Project to establish how important correct therapy intervention is for a child suffering with AADC.

Approved £1,500 for Web Site Enhancements. From October 2007, AADC Families, Professionals and Visitors will be able to log on to a dedicated area on our web site and share information about all aspects of AADC deficiency.

Awareness

Approved £1,500 for 3000 AADC Awareness Flyers.  Within the next two weeks the AADC Awareness Flyer 'Why Me' will be available. (details on how to get your copy will be available soon)

Why we still need your help

Sadly, the work doesn't stop here.  It may seem that we have accomplished all that is needed to improve the lives of children living with AADC.  Not so.  Research does not guarantee a cure.  Even though we have invested all your donations, to the above, these are just the tip of the iceberg.

A few of the Future Projects being discussed for funding include:

Oculogyric Crisis Vs Seizures.  Two AADC families are taking part in an Initial Observational Clinical Trial with a Professor of Neuroscience in November 2007.  Oculogyric Crisis is one of the most problematic symptoms suffered by AADC children.  We will report on the outcome of this trial.

Bio-Eden/Storage of AADC Baby Teeth for Stem Cell Research.  The Trust has been in discussion with Bio-Eden regarding the benefits this may have for children with AADC deficiency (if indeed any).  Cells obtained from the AADC child’s baby tooth pulp already harbour the AADC genetic flaw.  Not enough is known as to whether there may still be some benefits of storing these teeth.  Our Medical and Scientific Advisory Members will discuss this again in February 2008.

A Multilingual Web Site.  Sixteen countries have identified children with AADC.  With such a rare disease, information on how to care for these children is extremely limited unless English is spoken. The Trust considers this a very important Outreach Project.  We hope you agree.

Please look at our fundraising pages and see if there is an event which you would like to take part in.  Alternatively, you can organise your own event on our behalf or make a donation by cheque or via our on-line credit card link.  You can also e-mail lisa@aadcresearch.org about advertising your business or charity event on our web site.

Please continue to give generously.
We are enormously grateful for your support!
Board of Directors – October 2007