Website and Blog for the Sam McMahon Trust

Yesterday June 12th we held our 2nd Open Garden event. With the first visitors arriving at 9.50 in the morning and the last drifting off around 5.30 we were delighted but exhausted after such a great day. Although the weather has been unpredictable over the past few days, yesterday was different. The sun shone most of the time and at one stage someone said that it was a bit too hot!

Thanks to the team of workers who were kept busy for the whole day and thanks are due to all of the kind people who baked delicious cakes, buns and goodies for us. And thanks to you for coming, for taking time out of your weekend to support the event.

The National Ataxia Foundation (NAF)  has commenced its annual membership drive for 2010.

NAF strives to serve the ataxia community. The monies received from membership fees and donations pay for the various publications, maintanence of the website, development of support groups and awareness programmes. Their annual conference is attended by people from around the world and provides the opportunity to meet world class researchers and clinicians.

To join NAF or to find out more about them, click here.

This year the Open Garden event will take place on June 12th at 40 Templeroan Avenue in Knocklyon. The garden will open from 10am until 4pm and entrance is €5. There will be tea, coffee and plenty of home-made goodies.

Tickets for our annual raffle will be on sale on the day. With 15 superb prizes including a weekend for two people in London, no doubt they will sell out fast! Tickets will cost €10 for a book of 5, and there will be a limited number of goodie bags for early purchasers on the day.

The garden will open, rain or shine and all proceeds will go to the Sam McMahon Trust and the Friedreich’s Ataxia Research Alliance (FARA).

Last night at the Radisson Blu Hotel, chef Andrew Rudd entertained over two hundred guests with mouth-watering recipes and a demonstration that would encourage and motivate even the most reluctant cook. Thai Fishcakes, Chicken Satay, Medallions of Lamb with Mint and Coriander Salsa and Fragrant Thai Chicken Curry were created with ease. Desserts included Mascarpone and Ricotta Cheesecake and Meringue Roulade. While he cooked, Andrew regailed the audience with stories about his grandmother and tips on where to buy the best (and cheapest!) utensils and the highest quality produce. Thanks Andrew for a superb evening and for giving your time so generously. We wish you every success in the future.

There were 25 spot prizes, all supplied by kind sponsors, and goodie bags for ‘everyone in the audience’! Under the guidance of General Manager Neil Lane and the event co-ordinators Liga and Rebecca we couldn’t have asked for more. The Radisson Blu is a fabulous venue and we couldn’t have run the event without the expertise and support from the team there.

The  Loreto Rathfarnham Parents Association are a superb group. They had worked out every detail and were on hand to ensure that everything went according to plan. To those who sold tickets, packed goodie bags and spent the evening working, thank you! Thanks also to Sr Maria, Principal for her willingness to take the project on board and to Eugene Gargan who did MC on the night,  you did a great job!

To Clare and Pat, Sam’s grandmothers, thanks for being there and helping us out. To Karen, Andrew’s assistant, you took on a tough job and did us proud and to Sue who worked away hours before the event to ensure that everything was ‘just so’. To Jennie who gave up Wednesday evening to help with the goodie bags and to all of those people who worked quietly away in the background, we appreciate it. Thanks also to Ray and the gang at Menupages for their support. And finally to Sandra, who works tirelessly for Sam while being a busy mum and business women, we couldn’t do this without you.

And to each and every one of you that bought tickets and made the night fun, thanks!!!

Less than 3 weeks to go to the Andrew Rudd cookery demonstration fundraiser in St. Helen’s Radisson Hotel, Stillorgan, Dublin. Tickets cost 25 euro – everyone attending receives a goody bag and free entry into the raffle on the night with some great prizes including a nights stay at The Ritz and dinner in Gordon Ramsay restaurant for two. Tickets can be bought here.

The 2010 Flora Womens Mini Marathon takes palce on Bank Holiday Monday on June 7th.  The biggest all women’s event in the world, the event continues to grow year by year. Over the past number of days a number of people have expressed an interest in raising money for the Sam McMahon Trust. If you wish to obtain a sponsorship form then click here. Good luck with your training and thanks!

Another date has been added to the ‘Ride Ataxia’ calander for 2010. The Philadelphia event will take place on Sunday October 10th. Further details will be made available in the coming weeks. At the Symposium last November there were hopes that the 2010 Symposium would take place at the same weekend. Nothing has been confirmed yet but fingers crossed. Those of us who travel great distances to attend the Symposium might just get the chance to be part of the great Ride Ataxia event!!

Congratulations to all of those who were involved in the Ride Ataxia Tampa Bay on April 13th. With 75 riders and over $30,000 raised, the event was a great success. Kyle Bryant, the man behind Ride Ataxia was there to participate and inspire. Thanks Kyle! Check out Marc Dahl’s short film of the event here.

We wish we could be part of the Ride Ataxia events that are taking place across America this year, particularly the ‘Race Across America’ event. The Ride Ataxia Tampa Bay takes place on April 13th and the North California Ride will happen on May 15th and 16th.  With all of the miles between us all that we can do is to keep you up to date on the news and  encourage you to follow the team’s progress here. Of course you can always donate online on the Ride Ataxia site….

For more information about the ‘Race Across America’ and the four members of the FARA team click here.

In 1997 a group of parents who have children with Friedreich’s Ataxia began to email each other to share experiences, ideas and information. Since then the group has grown and stretched across continents and time zones. All parents with concerns, worries and insights into FA. The group allows parents the chance to ‘think out loud’, to receive advice and help, even though physically they are miles apart.

The FAPG website has been revamped and developed. It offers parents a new forum to share their experiences and knowledge. Information about FA, details of forthcoming fundraising events and photos of our children and families are included. One you register with FAPG you can include other information and photos. Click here to see the new site.