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Welcome to our Summer 2013 Newsletter!

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Congratulations to all the parents on their new arrivals since our last bulletin. The NAIT world has been pretty busy!!! and welcome to all our new readers!

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Trustee Vacancy

Treasurer Vacancy

Unfortunately due to family and work study commitments Becky Robinson is sadly leaving her post as Treasurer of Naitbabies. Becky has been and always will be a valuable member of our team so we are thrilled she will continue with her role working on the newsletter and as a member of our volunteer team.

 
Treasurer required

Naitbabies org is a non-profit organisation set up in 2011 with the purpose of supporting families, offering information and raising awareness about the genetic disorder neonatal alloimmune thrombocytopenia (NAIT or FNAIT).
We are a dynamic and ambitious charity based in the UK although we support families worldwide.
An exciting opportunity has arisen for a talented and caring professional to take on the role of Treasurer.
You will oversee the financial function of the charity so a financial or accountancy background and/or knowledge of the voluntary sector is desirable.
You MUST be resident in England or Wales (this is due to UK charity legislation.)
Please note that this is a voluntary unpaid position.
For more information and full details please email info@naitbabies.org
Please submit your CV with 2 references to: info@naitbabies.org using subject title "Treasurer".

NAITBABIES – 3 PEAKS CHALLENGE

Back in July 2012 a group of Naitbabies members, friends and supporters travelled up to Scotland to begin a weekend of climbing.  The aim was to climb the three highest mountains in Scotland, England and Wales all within 24 hours.  The total distance walked is estimated at 44 kilometres (27 miles) with a total ascent of 9,800 feet (3,000 m) and at least 10 hours of driving in between. 
Ben Nevis (1,344 metres, 4,409 ft), the highest mountain in Scotland
Scafell Pike (978 m, 3,209 ft), the highest mountain in England
Snowdon / Yr Wyddfa (1,085 m, 3,560 ft.), the highest mountain in Wales).
 
Preparation for the event had begun months before for the group of 15 climbers.  All of us had been doing training walks and climbs, gathering the necessary equipment, arranging transport, and there was lots of excitement when everybody finally all got together in Scotland the day before the beginning of the challenge.  The team, although having had lots of email contact prior to the challenge, had not all met before and so there was a lot of getting to know each other on arrival at the hotel.
 
Ben Nevis was the first mountain of the challenge and we arrived at about 4pm in the afternoon with the aim of completing the climb before darkness set in so we could travel to Scafell Pike overnight and begin that climb in the early hours of the following day.
 
Ben Nevis is the highest of the mountains in the challenge and it looked huge when stood at the bottom!  We all set off in small groups according to our fitness levels and experience.  Some of the fittest guys were out of sight before the rest of us had got round the first corner but that didn’t matter.  We all had personal goals to aim for during the weekend and completing Ben Nevis in less than 5 hours wasn’t one of mine!!
 
The views going up Ben Nevis were breathtaking and seemed to make me forget how tired my legs were getting. 
 
It was incredible how much the temperature dropped during our ascent.  We started out in t-shirts at the bottom and by the top we were all in full winter gear and still feeling the cold.  It was the middle of July and there was snow on the ground.  There was not much to see at the summit as the mist was thick as the day was getting later.   After a brief respite at the top, it was time to begin the descent.  This was harder than I thought as some areas were quite steep and it was difficult to maintain a steady pace. 
 
I was in the last group to get back down to the minibus and a welcoming committee greeted us!  The rest of the group had come to cheer us on for the last few metres and cups of hot coffee were thrust into our hands.  After a quick snack and comfort break, we set off for mountain number two.
 
We arrived at the base of Scafell Pike in the early hours of the morning.  It was a beautiful day and the sun was coming up behind the mountains.  Scafell Pike was completed in a bit of a blur.  The tiredness was kicking in following the trek up Ben Nevis a few hours earlier and the lack of sleep was very noticeable.  Scafell has a very different terrain to Ben Nevis.  There were lots of loose boulders to step on which was hard on the ankles.  I thought that the landscape was a little bleak and so was not as distracting as it had been in Scotland.  I felt every step up and down!
 
The weather was beginning to turn when we got to Snowdon, but this was the last push before we could go home and get some well-earned rest.  Morale was high as the end was in sight and off we set. Some of the men had gone on ahead but the rest of us were making fairly good time.  As we were nearing the summit though, the weather began to get worse.  The wind was getting stronger and stronger and we were finding it increasingly difficult to stay standing up in the exposed places.  We knew that we were only about 20 minutes from the summit, but to get there we would have to cross a very exposed area with a rather steep drop on one side.  We all stood in silence for a while until someone was brave enough to say what we were all thinking – that we would have to abandon the challenge as it was just too dangerous to carry on.  There were tears.  We had worked so hard to get to this point and the reasons for us all doing this were so personal and not completing the challenge hadn’t been part of the plan.  However, in the end, the only option was to come back down the mountain before we got blown over the edge!  Some of the group had managed to reach the top before the weather got too bad, so they were able to complete the full challenge.
 
In all we managed to raise in excess of £7,000 between us for Naitbabies, and we all made some great friends that weekend.
 
Climbers:
Gary Gill, Mickey Gill,  Becky Robinson, Lee Palmer, Marcus Davies-Friend, Conrad Levy, Andrea Palmer, Clare Everitt, David Andrews, Dwayne Gill, Stacy Corke, Thea Palmer, Kylie Cooper,  Timmy Brooks, John Saunders & last but not least Nait bear.
 
Also, a big thank you to Tracie and Natalie for providing hot drinks and plenty of support.
Becky Robinson

The Nuts Challenge

Stacy Corke
Why do I agree to these challenges, I really need to keep my lips sealed 
 â€œThe NUTS Challenge” yes and as the name suggests it really is for nuts!
It’s a crazy 7k/28k extreme challenge of mud, water and obstacle mayhem on an army assault course in Dorking Surrey, England.
 
The day dawns...
08.30am arrive at a field in the middle of nowhere. And set off to find my fellow nuts, Louise Comley, her husband Mat, Kellie DIllet, Gary and Dwayne Gill. We are apparently booked in for 2 laps, (14k) I think 1 at 7k is enough for me….. Well everyone seems pumped and raring to go, seeing all the crazy costumes and Tutus from other nuts gets everyone in the mood. I’m still not sure what I’m in for!!
 
9am and they are calling us to the start, It’s a great atmosphere and then we are off, no turning back now as I get dragged along on a tide of whoops and cheers..
Now I’m no runner so sent the super fit gang off in front while I tagged along at the rear with other like-minded individuals.
 
The 1st cargo net cleared and off to the next one, as we got deeper into the woods the obstacles got wilder, wetter and muddier. But the fun part was everyone helps drag one another up over and under the obstacles. Quarter way round and I don’t think there is an inch of me that isn’t smothered in mud, I glad there wasn’t a camera to catch me falling down a huge muddy bank, by now the others were miles in front , I could just catch glimpses of them up ahead through the trees, they looked equally as muddy..  Finally the end was in sight, just a few more obstacles, a lovely swim through the lake and a stagger to the finish line.  My time was nearly 2 and half hours!!  In the meantime Louise, Mat, Kellie, Gary & Dwayne are on their second lap.  They all make it look so easy...Louise was determined to beat Mat over the finish line!  And she did!
 
It was a fantastic day and everyone was still smiling despite plenty of scratches welts and what looked what would be humungous bruises forming!!

Mat walks the Test Way for Naitbabies

Matt and Ethan
On 14th October, Mat Robinson took part in the annual twenty five and a half mile charity walk “Walk the Test Way” organised by the Romsey Rotary Club, UK, raising funds for both Naitbabies and the RRC.

The route of the beautiful Test Way, in Hampshire, stretches approximately 45 miles from Inkpen Beacon in the north, to the town of Totton in the south. The 25.5 mile ‘marathon’ distance started at the village of St Mary Bourne alongside the Bourne Rivulet and ended up at the Romsey Memorial Park.  Originally, the route was used by sailors arriving in Southampton as a transit route to the Midlands.
In the few days leading up to the walk, it looked as though the entire distance would be have to be walked in the pouring rain, but on the big day, the sun came out and everyone was able to enjoy the beautiful countryside.

Mat was met at the finish line by little Ethan, his nephew, who was affected by NAIT and is very proud of his uncle for walking all that way!!!

Mat trained hard for the challenge and completed the route in a very respectable 7.5 hours raising £350 for Naitbabies.
Becky Robinson

PROFNAIT Project Sounding Board Meetings

Thea Palmer
The PROFNAIT project is a EU funded collaborative project between Prophylix Pharma AS  and Consortium members from leading European hospitals, universities and blood banks in Norway, Sweden, Denmark and Germany. The Project aims to develop a prophylactic treatment to prevent fetal neonatal alloimmune thrombocytopenia (FNAIT) using plasma donated from HPA -1a immunised women.

The purpose of the Sounding Board established by the PROFNAIT project is to secure that the treatment to prevent NAIT/FNAIT is developed and introduced into society in a scientifically and medically sound manner and under due consideration to the interests of both society and the affected families.

The Admiral Hotel, Copenhagen, Denmark November 25-26 2012 

Myself, Stacy Corke and Becky Robinson attended the first PROFNAIT Project Sounding Board meeting held in Copenhagen in November 2012. We flew in from London in the early evening and, after a walk through the lovely city, we were greeted at The Admiral Hotel by Dr Jens Kjeldsen-Kragh Chief Scientific Officer, Bjorn Skogen Chief Executive Officer, and Kerstin Jaras Plasma Collection Coordinator from Prophylix Pharma AS After an introduction to other members of the Sounding Board (SB) we all attended a Welcome Dinner held at the Salt Bar and Restaurant in the hotel.
Stacy, Thea and Becky with Dr J Bussel - Denmark
Stacy, Thea and Becky pictued with Prof James Bussel and Nait bear!
The meeting the following day included an introduction to the project and its challenges by PPAS and presentations by the Sounding Board members and members of the PROFNAIT consortium (below).
PROFNAIT Consortium members - 2012

Swedish Society of Medicine, Stockholm, Sweden July 11-12 2013

Stacy and I attended the second meeting on a lovely sunny day in July! We arrived in the early afternoon so were able to enjoy a wander around the shopping centre and photographed some lovely artwork in the Metro. We were welcomed by Jens and Kerstin and met with other members at the Welcome Dinner in the evening at the Lakaresallskapet restaurant, both the dinner and following days meeting were held at the Swedish Society of Medicine building.
The agenda for this meeting concerned Phase1/11 of the project.

PROFNAIT project Sounding Board members
PPAS-PROFNAIT Project Sounding Board Mtg June

Sounding Board Meeting - Swedish Society of Medicine, Stockholm-June

Prof. Anne Husebekk

Plasma collection which has already been started, will take place at several established blood banks in the United States, Germany, Norway and Sweden and Holland. If you are resident in these countries and know or suspect that you have been immunized against HPA-1a and would like to become a plasma donor please sign up!!  The Project also has a facebook page where you can message Kerstin Jaras Plasma Coordinator with any questions.

Plasma
Donate a precious gift - Plasma!!!

Naitbabies Meet With Dr. Cedric Ghevaert

Addenbrooke’s Hospital, Cambridge
Earlier in the year representatives from Naitbabies were very privileged to be invited to a reception held by Dr. Cedric Ghevaert (senior lecturer in transfusion medicine / consultant haematologist) at Addenbrooke’s Hospital in Cambridge.  The purpose of the reception was to give feedback on the results of a study carried out by Dr. Ghevaert and his team into a new treatment for NAIT.  Dr. Ghevaert has been working on a therapeutic blocking antibody treatment for 10 years and the reception was to share the results of a successful process of human trials.
 
Dr. Ghevaert and his team have developed an antibody in the laboratory that is similar to the mother’s antibody that binds to her baby’s platelets.  However the new antibody has been modified so that it does not destroy the platelets like the mother’s natural antibody does and it in fact acts as a barrier and protects the platelet as the mother’s antibody is unable to bind to the platelet as the new antibody has already done so.  The treatment would be administered via injections throughout pregnancy which is a far less invasive treatment that the current IVIG (intravenous immunoglobulin) therapy on offer to mother’s as treatment for NAIT, and as the treatment targets the platelets specifically, there are far fewer risks of side effects.
 
The results of the first in-man trials have proved very encouraging with the survival of platelets treated with the therapeutic antibody being far superior to the survival of platelets treated with a destructive antibody, and the team are now looking into the possibility of carrying out clinical trials in a couple of years’ time.   
 
This is a hugely exciting time because if the clinical trials are successful, this treatment could mean the end of gruelling IVIG infusions throughout pregnancy. 
 
For more information on the study and its results, please see http://www.nhsbt.nhs.uk/triennial-report/platelet-biology-and-genomics/recombinant-antibody-for-treatment/
 
Naitbabies will continue to follow the progress of Dr. Ghevaert’s work and will post updates on our website – www.naitbabies.org
Becky Robinson

Prior to the meeting we had the opportunity to meet up with nait mums, Sophie Gregorios a mum to be who was positively blooming and Hayley Bratt Martin with the very entertaining Cheska. In the evening we collected Rachael Walker from the rail station, having traveled down from Yorkshire, and along with Sue Tandy enjoyed a delicious meal at Jimmy Spices in Staines hosted by Gary and Tracy Gill our sponsors for the 3 peaks challenge!
Cheska Thea Sophie Louise Stacy and Becky

NAIT meet up with Gary and Tracy Gill, Rachel Walker, Louise Gill, Sue Tandy,Thea Palmer, Hayley Bratt Martin, Becky Robinson and Stacy Corke

Awareness/ Fundraiser initiatives

Charlotte’s Valentines Disco 16 February 2013
Charlotte Ravenhall, mum to four NAIT boys, Josh, Reece, Harley and Louie held a Valentine’s disco at The Highway Club in Coventry, West Midlands, UK on Saturday 16th February raising a huge £1,162.34!
 
Emelia’s fundraiser 24 November 2012
Anna Lovett and her family donated a splendid £500 after hosting an afternoon and evening at The Prince of Wales, Marlow, Buckinghamshire, UK to celebrate their daughter Emilia making a full recovery.
 
Jo and Shari run Cardiff half marathon 14 October 2012  
A total of £1,117.62 was raised on Sunday 14th October by NAIT mum Jo Robinson and friend Shari Smith, both from Caerphilly, Wales, UK.  Jo was running in memory of her beautiful daughter Isabelle.

Andrea and J-P hosted The OLD SKOOL DANCE RETROSPECTIVE 8 September 2012
The Sandsifter, Godrevy, Hayle, Cornwall, UK. This is the second event arranged by Andrea, J-P and MARS for Naitbabies, raising a fabby £500!!! Senen their daughter aged 4, has been severely disabled by NAIT.
 
THANK YOU to WIRES Vintage Collection 22 June 2012 for their wonderful donation of £200 raised at their Vintage Cocktail Party, an evening of nautical nostalgia, music, dance and fashion, which took place at the Acton Scott Museum New Barn, Shropshire, UK
 
Deina Johnson cookery demonstration and jewelery sale 19 May 2012
A HUGE thank you to Deina Johnson and her daughter’s Karris and Dion (London) for their NAIT awareness evening and raising a magnificent £600!

NAIT AWARENESS BEARS

The bears are still circumnavigating the globe raising awareness and visiting Nait families. Most recently in USA, Australia and New Zealand and shortly back to Europe.
If you would like a visit from Nait bear please contact the relevant area coordinator. The aim of the visiting bear is to raise awareness and promote Naitbabies so families who may find themselves in similar situations know they have a place to turn to.  So we ask that a few pictures be taken of his visit and loaded up to our blog for everyone to share in his journeys.
 
Bear Coordinators
USA - Angela Dugan email: naitbear@yahoo.com
Europe and elsewhere - Louise Gill email: louise@naitbabies.org

MEMBER SPOTLIGHT

Sian Challis – Glasgow, Scotland

Me and Cammy have been together for 7 years, 5 when we had Ewan, he was a lovely surprise. We met through work and hit it off right away. He’s a year older than me.
Pregnancy was great. I found out quite late, and was 4 months pregnant when I went to the docs as I didn't have any symptoms apart from gaining a few pounds. There was no reason to suspect anything was wrong as I was feeling fine and no obvious indication there was a problem.
 
I had Ewan in The Royal Alexandra Hospital in Paisley. My local hospital at the Vale of Leven only had a Community Midwife Unit (so no Doctors on the unit, midwifes only) and I didn’t feel comfortable with that for my first pregnancy (even although everything was going so well, just didn't like the idea of no doctors on hand) so that’s why I decided to go to Paisley. I had a water birth and it was really relaxing being in the water. Nice candles on and scented oil burning along with some low music playing. All was going well. Ewan was born at 4.35pm and he weighed 7lb 3oz, a nice healthy weight. He was 2 weeks early and I’m convinced it’s because he knew he needed out for help.

We gave him loads of cuddles and then I had some toast and tea, first I had eaten all day then we were taken up to the midwife unit. First sign of anything being wrong was when I was putting him into bed for the night and I had just changed him. I noticed that there was some pin prick bruises on his back and some other purplish marks. I thought it was a heat rash as it was really hot that summer and he had a blanket on. I asked the midwife to have a look and she looked a bit confused then went to get the doctor. He came in and they took Ewan away to examine him. I was starting to get a bit worried as nobody was telling me what was happening, I just saw a rash and then concluded it was bad. After a while they came in and told me his platelet count was very low and they needed to keep him in the Special Care Baby Unit. I went down and it was horrible seeing all the tiny babies with the tubes and machines bleeping.

After another while they came and told us that his platelet count was 4k and he needed to have a transfusion. At this point I didn't even know what platelets were! I so was upset, scared, confused and worried.

After the initial shock, we were advised that Ewan needed an MRI scan to check for internal bleeding. They had already performed an ultrasound on his tummy and said the results looked good. The MRI showed that he had 2 bleeds on his brain on the side controlling balance and coordination. We were advised that this could impact his development. In total, we spent 2 weeks in the hospital and he had 5 platelet transfusions. Once we were discharged, we had to attend Yorkhill on a daily basis at first to check his platelet levels and my heart was in my mouth every time waiting for the results to come back. Luckily, it never went as low as 4 again but took around 3 months to maintain a stable healthy level.

Ewan is 2 now and he is perfect. They did a repeat MRI on him when he was around 6 months and it showed no lasting damage. He was monitored by Yorkhill until his first birthday and there has been no effect to his development. He was walking at 12 months and can now put sentences together and knows loads of words.

We were advised that this would happen to future babies we have however we still have no conclusive answers as to which antibody was the cause. We have given several blood samples and are still waiting on a response. It’s getting to the stage now where we feel we have no other choice but to put something in writing asking for a reply. I’m a bit nervous about thinking about more children as I don't know how I would cope if things didn't work out but I would like to have another baby at some point in the future. For me it’s all still a bit too raw in my mind, even after 2 years. xxx Sian Challis.

Upcoming Events - 2013

11th August 

999 Funday Brighton & Hove, England - 11am till 5pm
Naitbabies have been chosen by the 999 Rescue services as their supported charity for this year’s annual event.
Emergency services from across Sussex will be hosting an action-packed Fun Day, being held at Kings Lawns, Hove. Sussex Police, East Sussex Fire and Rescue Service, South East Coast Ambulance Service, HM Coastguard and the RNLI will all be taking part, with arena displays throughout the day giving the opportunity for visitors to meet members of the emergency services and get an up-close look at 999 response vehicles.  Volunteers to help out on the day greatly appreciated…..
 

31st August

The Nuts Challenge
Round two.
Another intrepid team are facing the mud and water, raising money and awareness of Nait at The Nuts Challenge.  7k army assault course in Dorking Surrey. First timers this year are, Andrea Palmer, Emma Louise Yates, Sue Tandy, Rebecca Taylor, Thea Palmer, Sarah Twomlow and Lee Palmer. 
 

7th September

Llanishen Gold Club Charity Day   
We are thrilled that Richard Robinson, Captain of Llanishen golf club, north Cardiff, Wales has chosen Naitbabies to be his nominated charity for this year. Richard’s son David and his wife Jo lost their baby daughter Isabelle as a result of NAIT. Jo has also been a great supporter running in the Cardiff half marathon last year!

NEWSLETTER TEAM

Becky Robinson
Louise Gill
Newsletter draft development – Stacy Corke, Thea Palmer
 
Thank you to everyone who provided information for our Newsletter. Please contact us with any comments, news or suggestions for future bulletins.
Information in this newsletter is for the express purpose of raising awareness and does not necessarily reflect the views of Naitbabies.org. All medical information should be reviewed with your doctor before being acted upon.
Copyright © 2013 naitbabies.org, All rights reserved.


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