Contact Us
Sam’s site is a resource for everyone interested in Friedreich’s Ataxia in Ireland. Having had to gather much of this information ourselves since his diagnosis in November 2008, we felt it would be helpful to have a central resource to share what we have found out through sheer will and determination. We have gone beyond the shores of Ireland to search for help and have been rewarded by meeting caring professionals to whom we are extremely grateful for welcoming us into their circle.
The last 18 months have been incredibly tough but very special thanks are due to Sam’s doctor Dr. Bryan Lynch of Temple Street Hospital and his team both in Temple Street and the CRC and to Dr. David Lynch, FA specialist in The Childrens Hospital, Philadelphia. Their help and guidance has been brilliant.
We would be delighted to receive your feedback, news and questions.
Email: sammcmahontrust@ireland.com
Would you be interested in blogging something for rare disease day (Feb. 28) — I would like to collect as many posts as possible for rare disease day into one post with links on the Children’s Rare Disease Network blog, SNiPs. Email me if you would like to participate.
Catherine
Hi Catherine, I have emailed you regarding the blog for Rare Disease Day. Caroline
Well done last night….but Twitter and Facebook guys?
Glad you enjoyed it Barry. ‘Contact Us’ details now include link to Facebook. We’re not Twittering yet though! Caroline
Hi Sam and McMahon Family
Found your site on Google. Our daughter, Grace (14), was diagnosed with FA in September 2008. We have learned a lot since then – especially through the good folks at FARA. We always keep our FA family in our thoughts and prayers. Much good work is being done. All our best.
Tom and Caroline Hopkins
Quinebaug, Ct.
Tom and Caroline, it’s good to hear from you. We agree FARA are superb! They offer great hope and support for FA families. Great to hear from you! Caroline
Hi Sam, I found this site on google as well and my newphew (20 yrs old) has been diagnosed with FA this year. As his aunt I am reading up on FA as much as possible. I live in the Boston area and wondered if you had a symposium on FA in Boston,Ma? My newphew lives in Fla and I know through my sister there is one happening at the end of August in Tampa,Fla. As well as a support group? Thank you… Rosana
Hi Rosana, it’s good to hear from you. The best symposium (in our opinion) is the one that’s organised bt the Children’s Hospital in Philadelphia. It’s due to take place on November 14th this year and registration is open at present. There’s further information on our site if you want more details.
For support you should encourage your sister to register with FAPG (the Friedreich’s Ataxia Parents Group). We communicate by email. This is their address: http://www.faparents.org/fapg/
Take care,
Caroline