NEWSLETTER

Dear all,

DECEMBER 2008

CHECK THIS ISSUE FOR NEW WAYS TO FUNDRAISE, NEW MERCHANDISE, THE 2009 FAMILY WEEKEND, CHRISTMAS RAFFLE TICKETS WITH FANTASTIC PRIZES, AMN DAY & MORE
Finally, here is the Xmas newsletter. I know youll appreciate the reasons why it has been so long since the last one, but Im very happy and grateful to be in a position to write this one and to be able to tell you about lots of exciting news and to welcome those of you new to ALD Life. Following this rather difficult year I have taken the decision to give myself a bit of a break and to publish these newsletters on a six monthly basis for the time being. Although Ayden has come through the bone marrow transplant process successfully so far, we still have a long way to go. He is doing very well now hes home and has had his Hickman line out recently which is a huge psychological step forward for him. We can see improvements in his condition day to day and he is starting to slowly get back to his old self. Alex is still awaiting spinal surgery to correct a chronic spinal curve which cannot be done until the pressure sore sustained due to this spinal curve has healed which will hopefully be around Christmas time. Note to all parents of symptomatic boys, make sure if your son is exhibiting signs of spinal curvature they are fitted with a well fitting body brace as soon as possible. More importantly that this brace is reviewed on a regular basisunfortunately Alexs back problem stems from delays in the making of new braces which did not fit by the time he got them. We were eventually forced to look outside the National Health System and go private but this was unfortunately too late to correct the damage already done. However, on to more exciting newsinside you will find news on new ALD Life merchandise available, our Christmas raffle tickets, the opening of the second ALD Life charity shop, news of the 2008 and 2009 AMN Days, and I am so happy to be able to announce the date and venue for the next ALD Life Family Weekend. If you would like to come then please send us the booking form as soon as possible to ensure a place. More details on the event inside. Most of you will be aware that our medical advisor and trustee, Dr Philip Lee, has been taken ill this year with cancer. I am pleased to be able to let you know that he has successfully completed his first course of chemotherapy and things are going well. The hospital have arranged a symposium in recognition of his vital work with inherited metabolic disease on January 15th at Queens Square. Anyone wishing to attend should contact elaine.murphy@uclh.nhs.uk. And finally, please do keep on sending me your articles and photos for the newsletter and thank you so much for bearing with us and your support. Fundraising for ALD Life has been at an all time high this year for which I cannot thank you enough. We wish you all the very best Xmas and New Year you possibly can have and dont forget to buy a raffle ticket! SARA, ALEX & AYDEN xx

THIS NEWSLETTER IS DEDICATED TO THE FOLLOWING WHO HAVE SADLY PASSED AWAY FROM ALD:

SUDHIR GARG 27 OCTOBER 2007 AGED 42 VIVEK PALANISAMY 31 JANUARY 2008 AGED 11 NORA HEMESTRETCH 6 APRIL 2008 AGED 89 DEVIN DREHER 14 JULY 2008 AGED 13 LORENZO ODONE 3 JUNE 2008 AGED 30 DONALD JOHN ANGUS MORRISON 26 JULY 2008 AGED 45

FUND RAISING
I am so very pleased to say that since the appeal in the last newsletter for help raising funds so we can continue to put on events like the ALD Life Family Weekend, your fundraising efforts for the year have been astounding. We have had so many sponsored events and fundraising drives this year, I am quite speechless! So a massive thank you to all of you who have made such a sterling effort for ALD Life, I cannot begin to say how appreciated this is. Without it we really would not be putting the weekend on next year not to mention be able to fund our other work.

ALD LIFE CHRISTMAS CARDS

Finally, we have Christmas cards available at 2 per pack of 10. Apologies for the short notice but please do get in touch if you would like some!

CHRISTMAS RAFFLE
Enclosed with this newsletter are two books of raffle tickets for our Xmas raffle (UK only Im afraid). The draw is on Friday 19th December and the prizes are fantastic! Please, please buy at least one ticket and pass them around to your friends and work colleaguestheyre only 1 each! Weve even included a stamped addressed envelope to make it really easy for you to participate. And please do get in touch if youd like more.

NEW ALD LIFE MERCHANDISE

We now have a fantastic range of ALD Life merchandise for sale. If youre having a fundraising event or just want to help raise awareness by sporting one of our wristbands or t shirts, just let us know. Our wristbands are now in a lovely marbled effect in ALD Life blue and yellow. Price list T shirts Wristbands Keyrings Pens (red, blue, green, orange or purple)

5 50p 50p 50p

GIFT AID
Enclosed with the newsletter is a form for those who make regular or one-off donations to ALD Life. The HMRC in the UK runs a scheme called Gift Aid which means that if you decide to opt in to the scheme for every 1 you donate, HMRC will give an additional 28p. So please, if you would like to help us raise even more send back the Gift Aid form ticking the relevant boxit really is that easy!

STAR FUNDRAISER
COLLECTION BOXES
These continue to be an excellent source of regular donations so thanks to all of you who have taken the time to find venues for our boxes. We now have 26 in circulation throughout the country. Can you help us make this more? Contact Sara if you know of a shop, pub or workplace whod be happy to have one on their counterlets make ALD Life a household name for the future.
An enormous thank you to Anna Robson, who organised a fundraising day, golf event, auction and race day for ALD Life up in the North East. They have raised a whopping 8000 for uswords cannot express.. Annas young son, Alfie, carries the ALD gene, her mother Susan is a carrier and father John, has AMN.

FUND RAISING
OUR INTREPID ALD LIFE MARATHON RUNNERS
This year saw an amazing response to sponsorship for runners in the Marathon, Great North and Great South Runs. We had a total of eleven people running in these events for us over the year raising an incredible total of over 11,000 between them. So many, many thanks to Donna Laidler, Helen Little, Jenn Kerr, Tracey Rutherford, Jenny Newton, Dean and Kevin Steadman, Bernie Besnard, Caroline Walker, Katharine Tipper and Tyrone Thomas. I was there for the Great South Run in appalling weather conditions along with my partner Tyrone, and can certainly testify they earned their sponsorship! Although Ive certainly paid since having to wait hand and foot on Tyrone as he could barely walk for a couple of weeks afterwards! Places for next years runs have been applied for so watch this space and your emails for details for 2009.

Above Great South runners Bernie, Caroline (walking for nephew George McCaulay, sadly deceased) and Tyrone Left Great North runners, Donna, Jenny and Tracey

JOHN OGROATS TO LANDS END

A huge thank you must also go to Francis Pearce (left) who cycled from John OGroats to Lands End for us. His brother-in-law has recently been diagnosed with AMN and it was this that inspired him to organise the 1100 mile cycle along with two friends. T h e y started out on 6th July and completed the ride in a fortnight! This epic journey raised an incredible 3939.08 in total.

RAISE MONEY WHILE YOU SHOP!

The perfect fundraising solution for those of you who enjoy a bit of retail therapy. We have joined a scheme called Simple Fundraising. By using the following link: www.simplefundraising.co.uk/2522, you can register and then start shopping. There are over 200 retailers participating in this scheme including big names like Boots, ASDA, Tesco, Argos and so on. You can also change energy provider, purchase insurance etc through the site. All outlets participating give a commission on all purchases conducted through the site which is passed on to the charity on a monthly basis. It really is such a simple way of fundraising and doing your shopping at the same time. Please, please tell your friends and colleagues about this and help us raise the money we need to continue our work

THE ALD LIFE IRON MEN

Craig Naidoo and Tom Barrett will be taking part in the vigorous Iron Man challenge in Nice, France on June 28th 2009. Anyone wishing to sponsor them can go to www.justgiving.com/ironmancraigtom. The event includes a 2.4 mile swim, 112 mile bike ride and a 26.2 mile runrather you than me lads!

FUND RAISING
GREAT BRITISH DUCK RACE 2008
This year saw ALD Lifes second year participating in a great fun family event which is also an easy way to raise money for your favourite charity, hopefully ALD Life! For those of you not familiar with the event, the aim each year is to race thousands of rubber ducks down a stretch of the Thames by Hampton Court. Each duck is numbered and the winner gets a massive 10,000 plus there are lots of other prizes up for
grabs. It really is a lot of fun.

Many thanks to all of you who bought ducks for the day and to Cherie Taylor, Pat and Mike Hensby and Jim Jameson for running the tombola stall at the event. Despite the appalling English summer, the day itself was dry as you can see from the photos. We will continue to be a part of Duck Day and look forward to next yearso watch out for details on how to purchase your ducks for 2009.
Top: the ducks race down the Thames Bottom: ALD Life tombola stall

THE SECOND ALD LIFE CHARITY SHOP

long term volunteer has been employed since April to manage our new Sydenham shop and Helen (Elle) Usher has most recently From left: Lee, Theresa, Tyrone and Elle at Penge joined us as manager of our Penge store. My partner, Tyrone, has been instrumental in keeping things going whilst Ayden has been in hospital and is a whiz with our electrical and music section. I really cannot thank them and our wonderful volunteers enough for keeping things going and the improvements we have seen over the past few months.

I am so happy to report that we opened our second ALD Life charity shop on February 22nd this year in Sydenham, south east London. Our first shop in Penge has now been open for three years and we hope to open more as time goes on. Since we began the shop back in 2005 there have been many changes and we think weve just about got the right balance, hence the confidence to expand. With any new business, huge profits cannot be expected immediately, but the shops pay for all administration costs of the charity, paid for our first ALD Life Famiiy Weekend and will contribute to the 2009 weekend as well. There are many thanks to give for the running of the two shops, in particular this year as I have had to back out almost completely from their management. We have three new members of staff and new volunteers too. Lee Thorn joined us in May as our area manager between the two shops and has been busy redesigning our layouts and generally bringing both shops up to speed. Pauline Rattray, a

From left: Krissy, Rochelle, Danielle, Pauline and Sara at Sydenham

AMN DAY 2008 & 2009

2008
This years AMN Day way back in February was another very interesting day and were sure youll join us in thanking Chris Ogden for once again organising this. Rather than repeat a very comprehensive view of the day from Geoff Mahy, enclosed youll find a copy of his overview of the day. A huge thanks also to all our speakers, researchers and scientists, and especially Natasha Wood for making us all laugh. Chris is in the process of trying to locate scientists with expertise in these two areas. He will let you know how this develops. On the patient agenda, Chris has received a number of suggestions about possible presentations and workshops. Mark Bostock has volunteered to talk this year about his own experiences with AMN. And we have received a very welcome offer of a talk from a clinical psychologist, Danuta Orlowska. Danuta has done similar presentations to other patient groups which have been very well received. Her focus will be about positive behaviour therapy when dealing with conditions like AMN. The other idea is to present some of Chriss own ideas about AMN research. In particular he is keen to find better ways of promoting patient understanding about AMN in such a way that we might have a much better conversation with scientists. If Chris has missed any suggestions that others of you may have made about topics for talks, or if you have previously volunteered to do something, and its been forgotten, please remind us!

2009 6th International AMN Study Day

This is a much-postponed early announcement to confirm that we will be having our 6th International AMN Study Day on Wednesday, the 11 March 2009. This year we have selected a new location for the event that we hope will be convenient both for travellers to London and for those in wheelchairs or with mobility problems. The location is the National Council for Voluntary Organisations (NCVO) which is located near to Kings Cross station - about a 10 min walk. Their website is at www.ncvo-vol.org.uk and a map can be found on the Contact page. ALD Life which sponsors the study day is now a member of the NCVO. Our format for the day will be much as for previous years and Chris is busy trying to ensure that a similar contingent of scientists joins us for the day. However, recent conversations with some of these scientists has led to the idea that there is merit in bringing experts with backgrounds in two related disease areas into the discussion: these are the spastic paraplegias (SPG) and amyotrophic lateral sclerosis (ALS). Dont be alarmed by this idea - it doesnt mean anything more than that, at a fundamental cellular level, theres a possibility that similar things may be happening with these diseases as happens with AMN. Many of you will know of Chriss conviction that the more we can find common cause with other related diseases, the faster we can find cures and the easier it may be to raise funds for research, and hence was very receptive to this idea.

REFUNDING EXPENSES
As a general rule, ALD Life does not subsidise your travel, accommodation and living expenses for this event. However, if you want to come and your circumstances would prevent this due to the cost, we will examine specific situations, confidentially and case-by-case. Please contact Sara for details. So, please let us know if you intend to come to this 2009 event. All are welcome - newly diagnosed patients and old lags like Chris and Sara!

AMN DAY 2009

ALD LIFE FAMILY WEEKEND

And finally the news I have been hoping to announce for a long time now! The ALD Life Family Weekend is booked for the weekend starting 22nd May 2009. This time around we will be staying at the Hilton Hotel at Tower Bridge who have been extremely generous and also donated our first place raffle prize. As per last year we will be keeping the event strictly informal as a chance to meet others suffering the effects of ALD and AMN. The weekend will start on Friday evening with a meal and mingle. On Saturday you will be free to enjoy the hotels resources including a gym, spa, sauna and steam room. There is also a nearby health club with access to a swimming pool, fitness classes and a golf simulation lounge. A buffet lunch will be provided in the hotel. The Tower Bridge area is also steeped in history and we will arrange a trip to one of the famous landmarks in the afternoon (details to be confirmed). On Saturday evening there will again be a meal and a chance to mingle plus some surprises (again details to be confirmed). Check out will be Sunday lunchtime. I do hope youll join us for the weekend. The last one was a great success. A booking form is enclosed but please do book early as places are limited. If you want to come and have problems with travel expenses please do let us know

as we may be able to help, depending on the circumstance. Note all are welcome and the event is not exclusive to those living in the UK. Please contact Sara with any queries.

ALD LIFE CONTACT INFORMATION: ADVICE LINE/OFFICE - 020 8473 7493 PENGE SHOP - 020 8778 1144 SYDENHAM SHOP - 020 8659 7171 EMAIL INFO@ALDLIFE.ORG PO BOX 43642, LONDON SE22 OXR
Please note the advice line is at Saras home so there may not always be an answer, but leave a message and she will always get back to you. The shops are open 9.30 to 5.30 Monday to Saturday and 11 to 5 Sunday.

A SURPRISE FOR THE HUNT FAMILY!

REMEMBERING DEPARTED FRIENDS AND FAMILY

NORA HEMESTRETCH,
BY DAUGHTER KATHY Nora Hemestretch was affected by AMN, and ALD Life were honoured to be able to assist with her care needs during her last months. Noras daughter Kathy has kindly allowed us to use the following words, written for her mothers funeral, in the newsletter. Before having her children mum worked in most of the hospitals in Brighton and Hove. After having her children she worked nights, and eventually became nursing sister at Sunningdale nursing home in Hove. She was obviously loved by everybody and known as Sister Hemmie. She liked everybody to be punctual and regular, and was known as the Poo Queen to all the residents! As far as her role of a Mother she was simply the best, way ahead of her time, as we could talk to her about anything. She taught us never to judge anyone by their colour or creed saying Youre as good as the next man and better than most. She was very house proud, but most of all very family proud, we always got total support from her, in everything we did. She had no vices, she never smoked or drank, except on a couple of occasions when Gerard told her that Malibu was the name of a pineapple drink, and her brother Pearse gave her a nice cherry flavoured drink which turned out to be cherry brandy. Men! Not only was she a wonderful mother she was a brilliant grandmother. Sadly Dad passed away before any grandchildren were born but we all said he sent them down to her from heaven so she wouldnt miss him too much. She was especially good with our darling Kieran. He was her first grandson and when he became ill at the age of 10 with ALD, she was totally there for us all. She retired aged 76 in order to help us look after him. It was a devastating time for all of us as he was only given 1-2 years. With mums help and support Kieran is still sitting here 14 years later. Mum was a strong, loving, kind, compassionate, wonderful person, and she left us with many of her traits: kindness, gentleness, fortitude, decency, strength and tenacity amongst her other wonderful qualities, too many to mention. She was the last of a generation, and words cannot describe how we will miss her. We love you Mum, Goodnight, God Bless

Our mum was born in Bilamore in 1918, a small hamlet of cottages just outside the village of Oughterard, Co Galway. The youngest girl, of 10 children, 5 girls, 5 boys, this was a large close loving family. She left Ireland in 1937 aged 18 to go to London to train as a nurse in Orpington, Kent. When she arrived she was supposed to be met at Victoria station but nobody turned up, so she made her way across London on her own, even though she had just left a tiny village in Ireland. She had never been to a big city, never seen escalators, the underground and was terrified of being in London on her own, but she got there, of course. She spent two years at Orpington and qualified as a state enrolled nurse. The Second World War had by then begun. The hospital was bombed, one ward destroyed but luckily no one was hurt. From where she was, she stood and watched London burning from her hospital window. She then moved to Kingston county hospital to train as a state registered nurse and that was bombed in 1940 by a V1 doodle bomb. Mum was in bed at the time as she refused to go down into the underground shelter in the air raids. It demolished half a hospital wing and killed many, including one of the sisters. During her time at Kingston she also nursed so many war wounded including the Blue Boys from Dunkirk. She then went to Woolwich hospital and was there for VE day on VJ day 1946 mum went into London where she lost her shoes in the crowd outside the palace and had to walk home in bare feet. Also during the war she attended a friends wedding at number 10 Rutland Road Hove. She was given a glass of wine, but as she did not drink, a handsome soldier offered to drink it for her. And youve guessed it, that soldier became our beloved Father. With mums nursing training and dad being in Burma they waited until March 1948. She walked to the church from 4 Rutland Road, to which she returned after she was married and lived for 60 years.

REMEMBERING DEPARTED FRIENDS AND FAMILY

TO DEVIN WITH LOVE
God made you in His image, Youre a Beautiful person to see He also blessed us by giving you a little bit of Kenny And a little of Me. I miss those Saturday Mornings when you would fix a sandwich And one for your Mom, too. How you loved the outside and dressed so neatly, From your head down to your shoes. I miss seeing you and Josh playing, running And enjoying the outside! And how you liked to run from people and then come In the house to hide. You have a beautiful smile, seen by all from the very start. A smile that is so lovely it could melt the coldest heart. I miss you sayingThats not fair or asking, Mom, but why? I always tried to explain this love I have so deep inside. To teach you the simple difference between whats right and wrong. Sometimes I even tried to explain it by singing you a song! As tired as I became from doing homework with you2 hours many nights, Id do it happily if that would change whats happening in your life! The many times I came to school to assure you passed your tests. Those visits simply were not needed Son because you were doing your best. It hurts me now that we did not know how hard you must have tried. Yet, God helped you keep your head up and graced you with much pride. As I remember all the times we talked and the conversations we shared, I really do believe you saw Heaven and all our family members there! I thank God for you going to Church and your relationship with Him above! I hope that I have done His will because it was done with a Mothers Love. Although I cannot touch you now due to your disease. Please know in your heart how much I Love You The pain will surely ease. Your Mother would give anything to save your precious life. Yet, All I can do is thank God that Jesus has paid the price! I Love You, Mom

A SAD FAREWELL TO FLOSSIE KING,

GRANDMOTHER OF KIM APPS, REST IN PEACE 14 DECEMBER 2007 Donations of 255 were kindly collected at her funeral for which we would like to sincerely thank the Apps family.

NEVER FORGOTTEN ....

Billy George Apps, age 7 Daniel Bray, age 6 James Cowpland Devin Dreher, age 13 Ronald Edwards, age 68 Jonathan Mark Ellerby, age 41 Sudhir Garg, age 42 Mike Garrett, age 55 Alexander Harrison, age 8 Nora Hemestretch, age 89 Aaron Robert Hultman, age 9 James P Kane sr, age 53 Christopher Andrew Keenan, age 10 Oliver Liley, age 14 George Ross Martin, age 8 Nathan Kurtis Morganroth, age 6 Donald Morrison, age 45 Lorenzo Odone, age 30 Jonathan Lee Padgett, age 28 Vivek Palanisamy, age 11 Joseph Payne, age 6 Lawrence Prifti, age 8 Bailey Robinson, age 7 Stephen Scanlon, age 36 Michael Strangwood, age 13 David John Suppan, age 10

Registered office 16 Marcus Garvey Mews, London SE22 0RG A company limited by guarantee incorporated in England

Registered charity no. 1106008 Company Registration no. 5142341