Archive for the ‘Families’ Category

Fanconi Hope FA Conference and Family Fun Day Invitation

Friday, June 23rd, 2017

If you or a family member is affected by Fanconi Anaemia (FA) in the UK or Ireland, you are cordially invited to attend our Fanconi Anaemia Conference and Family Fun Day to be held at Twycross Zoo Conference Centre near Tamworth, northeast of Birmingham, on Saturday 14th October 2017 from 10.30am to 5pm, followed by an evening meal and overnight accommodation at the Appleby Park Hotel nearby. There is no charge for the event, meals or Saturday night accommodation.

  • Hear from a range of specialists about:-
    • Clinical management of FA and long term health issues,
    • Genetic and biological aspects of FA,
    • The latest developments in gene therapy research,
    • Pre-implantation genetic diagnosis (PGD) IVF,
    • Oncological aspects of FA.
  • Hear first hand from FA parents and patients who have been through the mill.
  • Meet our new UK FA coordinator, Beth Lee, and hear more about family issues and the late effects of FA. She will introduce you to the new Fanconi Hope-funded Study into the long term health implications of FA and how you can contribute.
  • Take part at the event in an international research programme into the early detection of cancers run by Dr Eunike Veueller and Ralf Dietrich.
  • Talk to a representative from Anthony Nolan about bone marrow and stem cell donation and how you can help them.
  • Talk to a representative from Contact a Family to see how they can help you.
  • Learn more about the work of the charity and how you can help.
  • Enjoy an evening meal in relaxed surroundings with families and FA specialists at the Appleby Park Hotel nearby.

The FA Conference

The meeting will start with Refreshments at 10.30am, with a series of presentations and discussions starting at 11am and finishing at 5pm.

The Zoo and Indoor Play Area

  • There is an extensive indoor Play Area just outside the door of the conference venue and free day tickets are available on request for children to drop in as much as they like during the day.
  • Zoo tickets for adults and children are available free of charge for those who wish to have them (see booking form). The conference venue sits within the Zoo, giving you the opportunity to pop into the Zoo at any time during the day should you wish.
  • A number of Fanconi Hope helpers will be on hand to help out if required.
  • Free tickets are available for both the Play Area and the Zoo but these must be booked in advance using the booking form.

 

How to Book Places at the Conference, the Evening Meal, the Zoo and the Play Area

Please download and complete the Booking Form (even if you have previously expressed interest via Eventbrite).

You can either complete the pdf form electronically and email it to Bob Dalgleish at

or you can print it off, fill it in and post it back to the Secretary, Fanconi Hope, PO Box 905, Southsea PO1 9JG.

How to book the hotel for Saturday Night

Please reserve rooms direct with the Appleby Park Hotel by calling them on 01530 279500. Don’t forget to mention Fanconi Hope to receive the discounted rate. Please reserve rooms with your credit/debit card. You will not be charged for the reservation, and Fanconi Hope will pay the bill for your room after your stay.

Please note: should you wish to cancel the room reservation for any reason, you must do this direct with the hotel in sufficient time beforehand otherwise the charge for the room will go on your card.

If you wish to stay on Friday night also, we ask that you pay for this yourself as we are a small charity with limited funds. However, you can still mention Fanconi Hope to receive the same discounted rate.

The Venue and How to Get There 

Twycross Zoo, Burton Road (A444), Atherstone, CV9 3PX, (0844 474 1777).

(www.twycrosszoo.org).   Map to venue

The Zoo is conveniently located just 5 minutes from J11 of the M42 and 20 minutes from Tamworth and Nuneaton Train Stations. (Tamworth Station is recommended by the Zoo for best availability of taxis – Acorn Taxis 01827 63333)

Click here to download map of the zoo itself.

Appleby Park Hotel, Junction 11/M42, A444, Atherstone Road,  Appleby Magna near Tamworth, DE12 7AP (01530 279500)

http://www.applebyparkhotel.com

Note: Please be careful not to confuse this hotel with the similarly named Appleby Hotel close by.

 

If you have any queries about the event please contact us online or call the Secretary, Bob Dalgleish on 0300 330 1410.

Also, to comply with the imminent General Data Protection Regulations, if you are happy to be contacted by Fanconi Hope again in the future could you please confirm this in your response.

What you CAN do with Fanconi Anaemia.

Saturday, June 3rd, 2017

Here’s an encouraging story about Amy Parry on her forthcoming trip to undertake voluntary work in Cambodia – 8 years post-bone marrow transplant.

Amy was diagnosed with Fanconi Anaemia in April 2008, and by February 2009 she was in hospital getting ready for a bone marrow transplant. After her chemotherapy she had the transplant, and everything seemed fine. Unfortunately the transplant failed and she had to have another period of chemotherapy before a second transplant in May 2009.

There were a number of problems that followed, and many difficulties, but eventually in February 2010 she was allowed to leave hospital, albeit still being fed through TPN, to try and resume some sort of normal life. She returned to school after an absence of 18 months, and then began to resume normal life.

There continued to be a number of hospital appointments, tests and investigations, but things did return to almost normal, which is where she is now.

In October 2015 she had started Year 10 at school and there was a presentation from Camps International about a trip to Cambodia in July 2017.This consists of 3 weeks volunteering in local communities, leaving a lasting legacy from the work to be done, and some cultural experiences as well as the adventure – learning to SCUBA dive.

Amy asked to go, and we filled the form in, but inevitably we were asked for medical confirmation that she was fit to go. It took about 3 months before she was finally given the confirmation that she could go on the trip, although we are still trying to access a specialist diving report to confirm she can do the scuba diving.

We are putting this on the website to show that even when things seem at their worst (and we know what that feels like) there is light at the end of the tunnel, and there is no reason why anyone shouldn’t be able to do ‘normal’ things.

Amy also has to raise the money to go, and has a Just Giving page here

If anyone wants any further information, or perhaps for us to come and talk to a group, please contact us via Fanconi Hope.

£8000 Grant Awarded to Fanconi Hope!

Sunday, March 19th, 2017

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We are pleased to announce that we have been awarded a grant of £8000 by the Duke of Devonshire’s Charitable Trust to help fund our Study into the Long Terms Effects and Treatment of Fanconi Anaemia, led by Dr Stefan Meyer in Manchester. This grant will make a significant contribution towards  the consolidation of the study and our ability to develop it as a long term activity with continued funding for Beth Lee to act as UK FA Coordinator, thereby providing the much-needed support to the FA community in the UK.  More about the study here.

Our thanks go to both the Duke of Devonshire’s Trust and to our patron, the Duchess of Devonshire, who invited us to apply for the grant.

 

Save the Date for FA Conference and Fun Day!

Sunday, March 19th, 2017
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Save the Date!

Saturday October 14th 2017

Fanconi Anaemia Conference and Fun Day

Organised by Fanconi Hope.

At the Twycross Zoo Conference Centre, Burton Rd, Atherstone, Warwickshire, CV9 3PX

– 10am to 5pm at the Conference Centre:  Conference and  opportunity for socialising and family fun at the Zoo itself.

– Evening Meal and a chance for more socialising at the Appleby Park Hotel nearby.

This is a chance to:-

  • meet up with others affected by Fanconi Anaemia.
  • learn more about FA and talk to clinicians and researchers in an informal environment.
  • meet our new FA Coordinator, Beth Lee.
  • take part in a world-wide study being led by Dr Eunike Velleuer and Ralf Dietrich.

The conference, dinner and zoo facilities are all free of charge. Overnight Saturday Accommodation available free on request.

If you or a family member are affected by Fanconi Anaemia and you would like to attend this free event, please register your interest here or contact us directly. More details will be published shortly, but you can register now to book your place.

Have your say! If you have any suggestions to make the event right for you, please contact us

How to get there:

Twycross Zoo is centrally located in the UK.

– By Road: Just 5 minutes from J11 of the M42

– By Rail: 20 minutes from Tamworth and Nuneaton Stations,  1 hr 42 mins London Waterloo to Nuneaton

poster map tz-logo-2
Download poster  Map  The Zoo

 

 

 

7th Annual International Gene Therapy Working Group Meeting

Friday, October 7th, 2016

Working Group LeafletThanks to Dr Juan Bueren and his team in Ciemat for hosting the 7th Annual International Gene Therapy Working Group Meeting being held on 7th October 2016 in Madrid.

The Working Group brings together world experts in Fanconi Anaemia, Gene and Cell Therapy, Gene Editing, Academic Research and Vector and Cell Manufacture to accelerate the move from research into clinical trials for improved treatments for FA.

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