Genotype/Phenotype Correlations, modelling and identification of potential targets for treatment

Catholic University School of Medicine
Rome, Italy
23 – 24 September  2013

The aim of the Symposium is to present the further progress of the research on Alternating Hemiplegia of Childhood (AHC), after the finding of the ATP1A3 gene as the primary cause of this rare neurological disease, to promote the international collaboration and recruit new teams of researchers.

Details Here:  http://www.symposium-atp1a3.tk/

Thank you to Mary Kay Riley for finding this venue which will be perfect for our meeting!

As she has done before each Family Meeting, Dr Swoboda and the Pediatric Motor Disorders Research Clinic team will be conducting AHC clinical appointments. Accompanied by her expert medical team this includes DNA collection and inclusion in the AHCF Clinical Registry, Genetics Counseling, History and Physical or update of previous H & P, Physical Therapy Assessment and a Private Session devoted to a patient question and answer period with one of the AHC experts on the team. There is no cost to the families for this.

There may be a nominal cost to schedule time with a behaviorist and other specialists as we further plan the agenda.

You will also get to meet and ask questions of our Medical Advisory Board which includes some of the premier experts in AHC, Dystonia, Behavior and Epilepsy.

We are devoting 3 days to meet, discuss, learn and exchange ideas. There will be no sessions scheduled for Sunday which allows for easy departure but we may have an informal gathering as a last good bye. We will be working on the agenda and investigating possible activities and hope to have the meeting entirely planned by July 1st this year.  We certainly would like your input and suggestions! Please email Lynn lynn@ahckids.org or Sharon sharon@ahckids.org with your ideas.

Registrations for the Family Meeting Conference and Hotel will be posted as soon as they are available. Clinical Appointments will be filled on a first come first served basis. Details to follow.

The Hilton features:

• Room rates of $139 on Monday/Tuesday and $129 on Wednesday through Sunday
• 3 miles from Minneapolis/St Paul International Airport with a complimentary shuttle to the Hotel
• Free on site parking
• Free in room internet
• Free breakfast buffet for children up to age 12 and 2 adults per room. Extra charge of $10 for additional adults in same room.
• Restaurants onsite and many other options close by
• 24 hour Fitness center
• Indoor pool and 2 whirlpools
• Perfect meeting set up,away from the public, with kids room in very close proximity
  

This is a fantastic location for families and is close to many great attractions:

• 1 mile from the Mall of America http://www.mallofamerica.com/ with complimentary shuttle service from the Hotel.  MOA has a bowling alley, movie theatre, Nickelodeon Amusement park, Sea Life Aquarium, Legoland, Comedy Clubs and of course, Shopping!  Restaurants ranging from fast food, family-type restaurants and fine dining are located there. A bonus for all shoppers, there is no sales tax on clothes in Minnesota!
• 1/4 mile (4 blocks) from Light Rail Transit with service to downtown Minneapolis, the Metrodome http://www.msfc.com/  and Target Field http://minnesota.twins.mlb.com/min/ballpark/index.jsp
• Adjacent to Minnesota Valley National Wildlife Refuge with over 8 miles of walking/jogging trails through the River Valley http://www.nps.gov/miss/planyourvisit/minnvall.htm
• 12 miles from downtown Minneapolis http://www.ci.minneapolis.mn.us/ and downtown St Paul http://www.stpaul.gov/
• Minneapolis Science Museum http://www.smm.org/ is within 15 minutes of the Hotel
• Minneapolis Zoo www.mnzoo.com is only 10 minutes south of the Hotel
  

Look for updates about the meeting and we hope to see you all there!!
AHCF Family Support Committee

Having served in many different positions with the foundation, and with a background as a school librarian, she knows the challenges AHC parents face. Lynn has a leadership style of grace and fairness, but isn’t afraid to handle the tough decisions, as she routinely does, with calm and thoughtfulness. Always open to new ideas and extremely hardworking, she leads by example and will be a passionate director. Lynn is a strong leader and well equipped to take on the challenges ahead as we continue to fulfill our mission of finding treatments and a cure for those who suffer from AHC.

Please join the Board of Directors in welcoming Lynn to her new role as president. Lynn can be reached at:  lynn@ahckids.org.

Gene Andrasco, Sharon Ciccidicola, Cate Cohen, Lynn Egan, Mollie Erpenbeck, Dr. George, Bill Gerber, Doug Morris, Vicky Platt, Carol Presunka, Mary Kay Riley, and Sue Roberts

Free, full text article on mouse model of AHC gene Read Here 

Please Note the Foundation Office has Moved. Our new mailing address is:

AHCF
2000 Town Center suite 1900
Southfield, MI 48075

or the letter from the President  http://rarediseaseday.us/message-to-nord-from-president-obama/

Read the History of AHCF  and learn how the foundation started as an idea at the kitchen table to who we have become today. It is truly amazing that we have dedicated, unselfish families all working for the same cause – a treatment and ultimately a cure for AHC. We are truly an ‘elite’ group who have bonded together for our children.  Lynn Egan