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Yahoo Group Happenings

Submitted by Alan Bates

Have you ever wanted up to date news on NPS?  Have you ever wanted to find out whether other people with NPS are going through the same things as you? Have you ever wanted to just be in regular contact with other people with NPS?
Since December, the means to do all that and more has existed on the Internet. The NPS Yahoo! Group. It's a discussion list where any emails sent in get distributed to anybody who chooses to subscribe.
So: we have this setup - what do we discuss? Anything. Everything. It doesn't have to be directly, or even remotely to do with NPS. We have no subject bars. Just join up and join the party.
In the last few months, some pretty incredible things have happened - we've helped move research along, we've found a new strength in each other, and (most remarkably) the steps to form a non-profit organization have been taken: without which, this newsletter would never have reached you.  The group feels like a family. Indeed we refer to it as a family, and affections for each other have grown dramatically. You could tell who was in contact with whom on a daily basis at the Arlington conference – the affection just shone out. You'll also get to know some pretty interesting characters along the way - its a diverse world out there, and we are as diverse as any other community, each of us discovering that we don't have to be alone with NPS anymore.
It's not de rigeur to be a member - but things move so fast these days that the Yahoo! Group is really the best way of keeping track of the many issues in the NPS world on a day-to-day basis. Join up, read the messages and start to post your own. 

You'll be amazed at the welcome - it really is quite addictive!
Try it out - it's no exaggeration to say that lives have changed because of it.
To subscribe, go to;

http://www.yahoo.com/group/nps.
For further questions, contact

 nps-owner@yahoo.com, and one of the
moderators will email you back.

NPSW Contacts

Medical Committee Update

The official NPSW medical Brochure is done! NPSW has completed an up-to-date medical brochure to help people with NPS educate their doctors and themselves. If you have not received a copy, you may request one at www.nailpatella.org, or write to us at: 

Nail Patella Syndrome Worldwide

PO Box 1417

Springfield, OR  97477

For specific information by email: medical@nailpatella.org

2001 Conference Update

Submitted by Denise Latanzi

The conference dates and location have been finalized for our 2001 conference. Please make your room reservations well in advance to help give us an idea of who will be attending.

Dates: July 27-28-29

Location:

Ramada Inn

300 West Palmdale Blvd.

Palmdale, CA

661/273-1200

or toll free

888/298-2054

Room rates are $51 for up to 4 people per room. If you have problems securing these rates, ask to speak with Jennifer Carbo, she is the events coordinator at the hotel and is responsible for the lower room rates for our conference.  There will be several interesting speakers who will cover topics including: Genetics, Ophthalmology, Nephrology, Orthopaedics, Radiology, Physiotherapy, Gynecology, and more.  There will also be a speaker from the U.K. who has examined over 125 individuals with NPS.  We hope that you and your family will be able to join us.  The first two days of the conference will be devoted to talks by our Medical Specialists, and discussion about our non-profit organization.  We are also organizing time for individuals to consult with the various physicians attending.  Saturday's activities will include a catered luncheon.   Childcare will be available.  The final day will be a potluck BBQ and pool party, so bring your swimsuits!

News From East Kilbride

Submitted by Carol Dobbins

 The Salmon Leap Fundraiser

I will always look back on the “Salmon Leap” event as one of the most memorable occasions in my life. The entire organization was a complete joy from the beginning to the end. With the love and support that I received from this exceptional “family”, the whole project had success written on it the entire time.

There was a huge amount of organizing to be done and I was very lucky to have great support from friends and family. I had notepads all over the house and in the car. Whenever I had a spare minute, I would write down ideas. I think this is a must in taking on a challenge like this as it is easy to forget so many things.

The first step was to find a suitable place to go ahead with the fundraiser. I found a local place that was willing to donate the function suite free of charge for our cause. As you can imagine, I jumped at the chance. I then had to find a reliable D.J. and was lucky to have a friend who does this for a living and, once again, was willing to donate his services completely free. Then there was the food to organize. I asked for as much help from friends and family and before long, we had a feast that would have fed an entire army! The raffle prizes was my main concern. Where would the prizes come from? I would have to contact as many people as possible and ask them to donate a prize. The response from this was incredible. I initially was hoping for about ten prizes…this escalated to forty-seven in such a short space of time.

Throughout the organizing of this event, I always had the intention of making an impact and making people remember this night. I wanted to incorporate something different and, much to my poor husband, Keith’s regret, I came up with the idea of “strip waxing” his legs. When I mentioned this to the people who I was selling the tickets to, they asked for more! My friend, David, also opted for the torture and I drew up sponsor forms for many people to take to their places of work. The response from this was very touching. People genuinely wanted to know what NPS was and wanted to help. I also maintained a good friendship with our local newspaper,”The East Kilbride News”. This was important, as I knew that I had their full back up and would give us more press coverage. I invited them along to the night and they accepted and also donated a lovely prize.

For many nights, I made posters and tried to imagine what the room would look like when it was decorated with our NPS information. I printed many booklets, which were all taken on the night.

On the day of the event, I was surprised at how calm I felt. I thought I would be so nervous, but I was so involved in all that was happening, I think I forgot to be nervous. Watching the raffle prize tables transform into this beautiful array of gifts was amazing. Then, I put on the wall for all to see, the incredibly touching letters that all our members sent. Many people who came for the night, commented on the emotion in these letters. The night was an absolute success and I was filled with so much pride at what we had all achieved. The night was such a lot of fun, but it also carried a strong message of the much-needed help that we all need. We need everyone to listen to us now. There should be no more doors slammed in our faces. We are here, and we have a voice.

I always had a hope that we would reach a target of approximately £600, but I never dreamt that we would reach £847. It was such an incredibly emotional moment when I sat down the following day and tallied it all up. We raised a lot of much needed cash and a great amount of awareness. We were in the following edition of the “East Kilbride News” again.

So, what next? Well, we can only go from strength to strength now. I am already discussing the possibility of an abseil next year and organizing a huge joint event with a friend who raises money for Cystic Fibrosis. The “Bella” magazine are coming to my house in the next couple of weeks and the article should go to print soon thereafter.

Thank you all for your love, support and inspiration.

More from East Kilbride

Recent publicity and fundraising events include the local school and the “Bella” magazine.

The magazine agreed to publish the story a few months ago as I felt that there was an urgent need to get the information into the women’s magazines also. I feel that this is also a way of reaching out and contacting people who may feel that they also have NPS. It is also a wonderful way of educating people about NPS in a very informal manner. The reporter arrived at the house a few weeks ago and we discussed NPS and my personal account of living with this condition for three hours. The photographer arrived two weeks ago and took all the necessary photographs for the article and we are hoping that in approximately five or six weeks from now, it will all go to print.

The local school has shown a tremendous amount of support since the day Stephen arrived. They have shown their love in many different ways. The most incredible moment arrived when they announced to me that they planned on having a disco fundraiser with all the proceeds going towards our cause. I must add that the teachers also came along to the previous fundraiser, so were reasonably clued up on what NPS is and what it means to us all. This is all going to plan right now and the tickets are now on sale. We are hoping to sell 120 tickets at this event so hopefully we will increase the funds sufficiently. At the moment I am drawing up posters and collecting “raffle prizes” again. I am writing to the local press to try and get as much coverage as possible again and printing out all the beautiful letters of thanks from our members to display on the night. The night is planned for the evening of the 28^th of April from 7.30pm-midnight in the school hall.

The other wonderful act of community support came from a local company who has issued Nail Patella Syndrome Worldwide with a cheque of £200. This was as a result of a friend who works in the company and myself getting together and writing letters. The charity committee is extremely interested in any future events that may be planned and have asked that I keep them informed. I am in the process of thanking the company right now and have thanked my neighbor from us all for the support he has given us.

Newsletter Update

Submitted by Denise Latanzi

 I would like to thank all the wonderful people who make this newsletter possible. From the people who write and submit their stories, to the people who copy, fold and stamp them, it takes a lot of effort to get it done, and I’m grateful.

 For our next newsletter we are going to concentrate on short bio’s on some of our members, and we’ll make the bio section a regular part of the newsletter. It helps to know that we’re not alone in our struggles with NPS, and maybe hearing someone else’s story will help you.

If you would like to see your bio included in one of the newsletters, please submit it to me at guardian@hughes.net .

FundRaising

Submitted by Joanne Mansour

It only seems fitting that Carol’s newsletter submission should precede this one.  Carol truly has been an inspiration to us all, and has done a great deal not only to raise awareness of NPS but also to raise funds. 

Our bank account is strong, and has been growing slowly but surely.  Twenty 2000 conference videos have been mailed out, and other donations have been received.  If you would still like to receive a video, please e-mail me.
I also would like to thank all of you for your support of our “Carol Coming to America Fund”.  At the suggestion of one of our newer members, many of you have sent in donations to help Carol and her family come to the California Conference.   Carol will be sharing her expertise in fundraising and building awareness.
We are currently looking at sponsors for our upcoming conference.  Many angles are being looked into simultaneously, and we hope to report some positive results shortly.   We have caught the ear of Bayer Pharmaceuticals who have agreed to send some of their products to our next conference. Bayer makes products that aid in daily urine testing for kidney disease.  We are also in discussions with another company that makes Orthotics and other products for lower body health.  One rule of thumb seems to be tat it never hurts to ask.
After doing some reading about this topic (I am by no means an expert in this department), it has become clear to me that contacts are the key to raising funds.  As you can see from Carol’s experiences, money has been received from people whom she didn’t even need to ask.  Carol just told them about our non-profit and what we were raising money for.
In the past months, I have sent out several letters to different organizations.  Many of you have e-mailed me with tips or ideas on companies that might be responsive to helping our cause.  If you think you may know of a company or organization that might be able to help us, e-mail me, and I would be happy to send a letter or make a phone call.   Companies will not know about our existence, if we don’t introduce ourselves first.  Many large companies have philanthropic programs.  If your company has one, and you would like to help, this is a wonderful way.  I can be the contact person, if you feel uncomfortable or are unwilling to do that.
I would like to take this opportunity to those of you who have helped in the past, and to those of you who will help in the future (because I know you will!).