The Niemann Pick Disease Group UK have annual conferences where all the A, B and C sufferers, family members, friends, Doctors, investigating students, charity members and so much more delegates get together for a weekend of information, fun, love and a time to relate.
My youngest sister has Niemann Pick type B and because of that, there is always space in her and my mum’s diary for the annual conference, whether it’s in Manchester, St Neots or anywhere else for that matter. They have been a valuable part of the conference for many years and always prepared, went and came back with stories and pictures.
Me, as Shani’s older and very supportive sister never actually attended a conference but when The Bible says “There is an occasion for everything, and a time for every activity under heaven: a time to give birth and a time to die... a time to be silent and a time to speak” Ecclesiastes 3: 1-8. The time for me to attend the conference came in September 2010.
Me, as Shani’s older and very supportive sister never actually attended a conference but when The Bible says “There is an occasion for everything, and a time for every activity under heaven: a time to give birth and a time to die... a time to be silent and a time to speak” Ecclesiastes 3: 1-8. The time for me to attend the conference came in September 2010.
My mum made plans for myself and my older sister who had also never been to a conference to attend that year. We were on the list of attendees, so we booked our train from London and on September 10th 2010 we got on the train from St Pancras Underground and made our way. I brought some much needed penny sweets because I hadn’t done that since I was in high school. I even got a Mr. Freeze Strawberry flavoured Ice pole and we embarked on our long journey at 7:00pm. I had high hopes for the weekend! I knew it would be fabulous because I had never heard a bad report about it from my mum or little sister, which is always a bonus.
We got to St Neots train station at 9:19pm and got a cab to the hotel we would be staying in for the weekend. I hadn’t stayed in a hotel since I went to Spain in 2007 so this would be extra nice, being catered to, luxury bedrooms etc – it’s always a pleasure!!
“
We got to St Neots train station at 9:19pm and got a cab to the hotel we would be staying in for the weekend. I hadn’t stayed in a hotel since I went to Spain in 2007 so this would be extra nice, being catered to, luxury bedrooms etc – it’s always a pleasure!!
As soon as my sister and I arrived at the hotel, we were greeted by Toni. I had heard so much lovely things about her over the years but had never spoken or seen her, so that goes back to Ecclesiastes 3: 1-8 (there is a time for everything). I was given my name badge and folder with information and plan for the weekend before I got told to go and get something to eat before the kitchen closes
As I got my hot plate of vegetables, potatoes (because I’m a potato head – I eat a lot of potatoes) and Salmon, I found a seat and started eating. (A good healthy diet is very important for all Niemann Pick sufferers) Before I knew it I was overhearing a very sentimental conversation. With my Blackberry by my side, I picked it up, tapped into Facebook and posted my status. I was sitting by myself so I had nobody to turn to and express how I felt, Facebook at the time was my only option.
As I got my hot plate of vegetables, potatoes (because I’m a potato head – I eat a lot of potatoes) and Salmon, I found a seat and started eating. (A good healthy diet is very important for all Niemann Pick sufferers) Before I knew it I was overhearing a very sentimental conversation. With my Blackberry by my side, I picked it up, tapped into Facebook and posted my status. I was sitting by myself so I had nobody to turn to and express how I felt, Facebook at the time was my only option.
“
After a long day, I finished eating my healthy dinner and went to find my hotel room so I could put my bags down, organise myself and get familiar with my home for the weekend. I did just that and went to sleep so I could be wide awake and energised for the conferences the next day.
On September 11th I joined the conferences at 9:00am, made loads of notes, learnt an awful lot (in a good way) and reminisced because I thoroughly enjoyed Biology when I was in high school. Science GCSE was compulsory, but I loved it so I understood a lot of the terminology especially the Enzyme talk because that is the key factor in terms of Niemann Pick type B that my sister has and lacks the Enzyme to break down her food. I soon posted my status again “
There was an opportunity for those who do not have any type of Niemann Pick to give blood in order to assist some of the future investigations. I jumped at the chance because my blood allowed them to compare what I have to that of a Niemann Pick sufferer to see what they are missing or even have too much of. Being able to help was such an important thing for me and it was perfect because I’m not scared of needles. (How could I be, I have two tattoos) I signed a consent form and sat down at 2:20pm to get a prick in my arm. I walked around with a little plaster but I felt good. “
Saturday is the day everyone yearns for year after year because all the children go on a trip and before the end of the day, they have a party. My little nephew came back with an upside down smile because he got chased by a goat and was petrified but we got him to put that behind him so we could get ready for the dinner, other activities and dance.
Next came the DJ and he played some great songs. Love lifts us up where we belong, A whole new world (Disney), Take me home..... My mum loved that one and with each somg my little nephew got in the centre and did his street dance style dancing, spinning around and all sorts. The DJ had everyone else dancing and singing too. Oh my, he even had some people doing karaoke, including my little sister and I. We sang Snoop Dogg and Katy Perry - California Girls even though were more of Florida girls but its kl. "I'm about to sing karaoke with my little sister, but its gonna be great because I have a remarkably terrible singing voice lol!"
That night was great, everyone enjoyed themselves, made friends, memories and me, I went outside and took photos. When you feel good inside, you look good outside and I certainly did (not conceited) My niece was the Photographer so I got in the bed of flowers and posed by a large shaped bush, on a bench and had a good time.
As I returned home, I had the Niemann Pick on my mind. The experience was great and although we werent celebrating, the occasion was commendable. My mum made a deal on my behalf that would help the Niemann Pick but I needed to do something the year after.
The 2011 conference was sneaking up fast and with me being a lover of photography, going after being a Professional Photographer, I saw an opportunity to do something great for all the people I met the year before. The largest light bulb went off in my head and I immediately told my mum and got in contact with Toni.
From June 13th 2011, myself and Toni corresponded about making a Perfectly Captured Beauty photo shoot possible in order to give everyone attending an uplifting, self esteem building photo shoot session that would in turn donate money to the Niemann Pick charity.
Because Toni said YES to my idea, I got planning. It kept me busy, learning and dedicated. The kind of photo shoot I was willing to provide the Niemann Pick family with wasnt small so I had a great amount of work to do but I loved it. It was for a great purpose. I won't lie, I got a bit stressed sometimes but it was for a good cause. I just asked god to give me the strength, ability and guide me so I could be successful and I put my trust in Him and got over my hurdles.
I researched, brought equipment, things I needed, made notes of ideas I had and as Friday 23rd September 2011 got closer I started packing my suitcase with everything i required. Once that was finally done I was ready to give everyone the high quality photo shoot they deserved.
If I was to give you the full list of all the props, equipment, forms for permission and decorations (to make my studio welcoming and comfortable) I had you would be reading for a while.
White furry rug, CD cases, photo paper, posters, PCB photo book, PCB portoflio, balloons, party poppers, CD pack, hard drive, laptop, camera kit, all sorts of wires, power tack, cello tape, frames, memory cards, printer, teddies, rubber ducks, flowers, real conkers, tree branches, fake flowers, pot puree, cars, instruments and I wont bore you anymore LOL!
I was prepared and ready to serve!
I'm cutting the story absolutely short so I can give you the photos and I'm just letting you know that the weekend was spectacular, well planned as always and a great follow up experience. The first year I went prompted me to do something great and I dont regreat it!
Enjoy the photos because I enjoyed taking the and the people loved making them,
I was asked to photograph some of the goings on during the conference weekend including Medikidz, things being sold, the actual conference, fun and laughter.
The conference was a success, I left my mark through Perfectly Captured Beauty and ensured that memories were saved through the photos I created. Some people purchased prints in frames, some brought whole collections on CDs but either way proceeds were donated to The Niemann Pick Disease Group UK. http://www.niemannpick.org.uk/index.html
Bringing beauty to the world through photography
Kayisha
That night was great, everyone enjoyed themselves, made friends, memories and me, I went outside and took photos. When you feel good inside, you look good outside and I certainly did (not conceited) My niece was the Photographer so I got in the bed of flowers and posed by a large shaped bush, on a bench and had a good time.
"There is an occasion for everything, and a time for every activity under heaven."
As I returned home, I had the Niemann Pick on my mind. The experience was great and although we werent celebrating, the occasion was commendable. My mum made a deal on my behalf that would help the Niemann Pick but I needed to do something the year after.
The 2011 conference was sneaking up fast and with me being a lover of photography, going after being a Professional Photographer, I saw an opportunity to do something great for all the people I met the year before. The largest light bulb went off in my head and I immediately told my mum and got in contact with Toni.
From June 13th 2011, myself and Toni corresponded about making a Perfectly Captured Beauty photo shoot possible in order to give everyone attending an uplifting, self esteem building photo shoot session that would in turn donate money to the Niemann Pick charity.
Because Toni said YES to my idea, I got planning. It kept me busy, learning and dedicated. The kind of photo shoot I was willing to provide the Niemann Pick family with wasnt small so I had a great amount of work to do but I loved it. It was for a great purpose. I won't lie, I got a bit stressed sometimes but it was for a good cause. I just asked god to give me the strength, ability and guide me so I could be successful and I put my trust in Him and got over my hurdles.
I researched, brought equipment, things I needed, made notes of ideas I had and as Friday 23rd September 2011 got closer I started packing my suitcase with everything i required. Once that was finally done I was ready to give everyone the high quality photo shoot they deserved.
If I was to give you the full list of all the props, equipment, forms for permission and decorations (to make my studio welcoming and comfortable) I had you would be reading for a while.
White furry rug, CD cases, photo paper, posters, PCB photo book, PCB portoflio, balloons, party poppers, CD pack, hard drive, laptop, camera kit, all sorts of wires, power tack, cello tape, frames, memory cards, printer, teddies, rubber ducks, flowers, real conkers, tree branches, fake flowers, pot puree, cars, instruments and I wont bore you anymore LOL!
I was prepared and ready to serve!
I'm cutting the story absolutely short so I can give you the photos and I'm just letting you know that the weekend was spectacular, well planned as always and a great follow up experience. The first year I went prompted me to do something great and I dont regreat it!
Enjoy the photos because I enjoyed taking the and the people loved making them,
 |
| Children's educational entertainment |
 |
| Chair of NPDG UK Jim Green |
 |
| Doctor Wasserstein and Betsy Bogard |
 |
| Evening dance |
 |
| http://angelicedesigns.webs.com/ |
 |
| Main conference room |
 |
| Hand made by Val |
The conference was a success, I left my mark through Perfectly Captured Beauty and ensured that memories were saved through the photos I created. Some people purchased prints in frames, some brought whole collections on CDs but either way proceeds were donated to The Niemann Pick Disease Group UK. http://www.niemannpick.org.uk/index.html
Bringing beauty to the world through photography
Keep on working, great job!
ReplyDelete