Thanks are due to Mike Finan of Chameleon Design for the impressive design of the poster.

Teresa Kennedy, FARF’s Family Support Coordinator advises:

“Attendance to the meeting is free and includes all meals and lodging.  Transportation is provided by Camp Sunshine to and from the Portland International Jetport in Maine.  Airfare is not included; however, limited scholarship assistance is available for families to help with some of the costs associated with travel. If you would like an application for scholarship assistance, please contact Teresa Kennedy.

Families will stay onsite at Camp Sunshine in their private family units. There is a well-staffed kitchen onsite that prepares all of the meals.  Parents will attend presentations by physicians while the children participate in fun, summer-camp group activities (swimming, crafts, games, sports, boating, cooking, singing, etc.) with volunteers. The volunteers have all had extensive background checks. Many of the volunteers attend the FA camp each summer. Of course, you are welcome to be with your children to make sure that they feel comfortable. And, there is a physician onsite.

Visiting www.campsunhine.org should give you a good idea about what to expect from their program in terms of activities for children.”

——-

However, in the first instance please check with your consultant whether transatlantic air travel is advisable, as very low platelet counts are of particular concern.

And don’t forget our Travel Insurance Information Sheet to find the names of insurers who are happy to cover FA patients.

Thomas Carroll, our Chairman, will be giving a talk entitled “Fanconi…hope: from ‘Saviour Sibling’ to gene therapy” on Monday 31st March and Dr Juan Bueren, who also presented at our Family Meeting will be talking on Wed 31st March on “Gene Therapy and Cell Reprogramming Approaches in Fanconi Anemia”

Fanconi Hope, who have Trustee membership of the BSGT, are sponsoring Dr Bueren’s attendance expenses and paying for a ‘bag drop’ which allows us to disseminate targetted Fanconi Hope literature to all those involved in Gene Therapy. This material will seek to persuade them to consider using Fanconi Anaemia as a basis for Gene Therapy research and trials.

Thomas O’Connor is running the Edinburgh

Marathon for Fanconi Hope on Sun 23rd May 2010. Please show your support by sponsoring him at http://www.justgiving.com/ThomasTeamLeighton  or turning up to cheer him on. Look out for his purple Fanconi Hope T Shirt!

There is also a ThomasTeamLeighton Facebook Page

The revamped French FA group AFMF’s website (www.fanconi.com)  is now live. An approximate English translation courtesy of Google Translate can be viewed here. Congratulations are due to Marie-Pierre Bichet and her team on an impressive result.

Fanconi Hope has been in discussion with Steven’s Association Moonrise, an FA charity in Belgium founded in April 2009. The organisers of the Charity have said they are happy to offer their services to, and collaborate with, Fanconi Hope in whatever way is most beneficial and we have responded likewise. Collaboration in funding research is one such area to be explored further.

Steven’s Association Moonrise is a non profit making organisation which has been launched in memory of Steven Keyes. Steven’s Association Moonrise is dedicated to raising money for the purpose of research into and raising awareness about Fanconi anaemia (FA) and its associated problems. Funds raised by Steven’s Association Moonrise will be used to support treatment iniatives for Fanconi Anaemia and the associated challenges this condition poses for successful stem cell/bone marrow transplant and cancer prevention and treatment.

Prof Lako’s group at Newcastle University focuses their research on understanding of the basic biology of human embryonic stem cells, their self-renewal and differentiation to haematopoietic, retinal and corneal lineages.

Peter McHugh runs the DNA Damage and Repair Research Group at Weatherall Institute of Molecular Medicine, University of Oxford, John Radcliffe Hospital, Oxford Peter’s group has an increasing interest in FA, and has recently published their first paper in this area. Peter regularly participates in the US FARF, is giving a lecture this year, and is a regular grant reviewer for the FARF.

Michael Carty’s group at the DNA Damage Response laboratory at NUI, Galway have an interest in Fanconi Anaemia as part of their research into the responses of cells to DNA damaging agents such as cisplatin and mitomycin C, and to mitosene derivatives synthesized by colleagues in the School of Chemistry at NUI, Galway.

“We are repeating a survey and report done in 2008 about the finances of families with disabled children – Counting the Costs. It will help us to lobby for change after the general election. We need 800 families to take part – can you help us spread the word please. Follow this link to find out more about the survey http://bit.ly/9IsnC3. It should take only 5 minutes to complete.”

Urgent: More Tatton Park Grand Ball tickets need to be sold.

Louise Parry, an FA parent, is organising a Grand black tie and ballgown Dinner at Tatton Park in Cheshire on Saturday 13th March 2010, to raise funds for Fanconi Hope.  Tickets are priced at £80 each but many very valuable items have been donated for a Grand Auction, including hotel weekends for 2, 2 Gold British Grand Prix tickets (worth £280 each), Take That signed CD and DVD, Signed Man U and Chelsea shirts, Meal for 10 cooked at your home and much much more, so there is an excellent chance of bringing home a bargain worth more than the ticket price.  

To make this event a financial success more tables of 8 need to be sold. If you know of any individuals or companies able to sponsor or attend could you please contact Louise Parry as soon as possible on 07970 676 006 or contact by e-mail.

This link between FA and potential mainstream cancer cures amply illustrates the importance of spending money on research into orphan diseases such as FA. This is clearly recognised by Cancer Research UK as they have over 7 people  in 2 separate research labs currently working on FA. 

More: http://news.scotsman.com/science/New-hope-as-cancers39-.6071258.jp