Website and Blog for the Sam McMahon Trust
September 25th is International Ataxia Awareness Day.
We would like to take this opportunity to thank all of those who work tirelessly to raise awareness about FA.
To the specialists, scientists and researchers who have dedicated their efforts to finding a cure, we think you are GREAT!
Details about the 4th Friedreich’s Ataxia Symposium have just been released. The conference will take place on Saturday October 8th at the Crowne Plaza Valley Forge located in King of Prussia PA.
Presentations will include information about Neurological Features of FA, Diabetes, Biochemical Mechanisms and Therapeutic Pathways. There will also be presentations on current research and a Q & A session with the Research Panel.
For more details about the Symposium, information about the hotel and the relevant links for registration, click here.
It’s hard to believe that this will be our 4th year attending this symposium and we wouldn’t miss it for the world. We are looking forward to meeting all of the people who have now become a very important part of our extended family!
A number of people have contacted us recently to ask us about visiting Philadelphia.
Preparing to visit a doctor can be stressful but having to book airline tickets and find the right hotel, we that’s another story. We are not experts but we have made the trip on several occasions now. So here is what we’ve learned.
US Airways fly direct from Dublin to Philadelphia. The flight from Dublin to Philadelphia takes about 7 hours 40 minutes and the return trip takes an hour less, taking 6 hours 40 minutes.
We have always taken a taxi from the airport to our hotel. It costs about $30 including a tip. The taxi service that serves Philadelphia is reliable and there are plenty of them.
There is a wide variety of hotels to serve all needs and pockets in Philadelphia. We have stayed in the Downtown Marriott and the DoubleTree. Both hotels are family friendly and have accessible rooms. Both hotels are very central and located near City Hall. When you are looking your hotel remember that generally prices are charged per room and that there are taxes due on top of that tarrif. If you are visiting the Children’s Hospital of Philadelphia (CHOP) then it would be best to take a taxi from outside your hotel to the hospital.
Philadelphia is a relatively small city. There are plenty of cafes and restaurants. Rittenhouse Square boasts a superb atmosphere with cafes overlooking the little park. The Eastern State Penitentiary with Al Capone’s cell and Death Row, is well worth a visit. For a little ‘retail therapy’ there are several shops in central Philadephia. The Apple Store, Macys, Banana Republic to name but a few. If you require serious shopping then a trip to the King of Prussia Mall will not disappoint. The only drawback is that it’s about 45 minutes outside Phladelphia. For those interested in a little history then a trip to the Liberty Bell Centre will entertain. Finally, it would be a pity to visit Philadelphia and not to run up the steps of the Musuem of Art, just a Rocky did in the movie. There’s also a statue of Rocky – the perfect photo opportunity!
Let us know how you get on. We can add you experiences to what we have learned!
At the start of the year we resolved to organise a lunch for Mums who have kids with FA. Well we are true to our word!
We will meet on June 18th at the D4 Berkeley on Landsdowne Road between 1.30/2pm.
If you would like to come along please contact us at sammcmahontrust@ireland.com.
We are looking forward to seeing you.
The third annual Friedreich’s Ataxia Symposium took place last weekend in Philadelphia. With approximately 250 in attendence this was the largest gathering to date.
The Meet and Greet session on Friday evening gave people the chance to get together and to discuss their thoughts and experiences. Kyle Bryant and his Race Across America team mates shared their memories of the eight day, seven hour and fifty nine second race. The team were followed by a film crew and over the coming months the footage will be edited and a documentary will result.
Saturday began with an early start at 7.30. There were presentations on Biochemical Mechanisms and Therapeutic Pathways, Financial Planning and Personal Care Assistants. The keynote lecture was given by Richard Cohen, author of Strong of the Broken Places.
Over the coming days we will post important, up-to-date information that we learned about managing FA.
Over the past number of months Sam’s mum Caroline has been working with the Special Education Support Service (SESS). Their role is to enhance the quality of teaching and learning in relation to special educational provision. The SESS works under the Teacher Education Section of the Department of Education and Science.
Some time ago the SESS published ‘Signposts’, in order to outline how differing categories of special educational need can affect teaching and learning. It also offers tips for teaching, along with additional resources and references. It is a well organised and informative guide for all involved in education. Until now there was nothing about Friedreich’s Ataxia but all that has changed. Thanks to the vision of the SESS and Caroline’s willingness to put together the necessary information.
Feel free to download the guide here. A copy will be made available to all of the primary and secondary schools in Ireland. With understanding there is no reason why children and young people with FA can’t succeed in school and it is hoped that this guide will help to broaden understanding and further raise awareness.