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eGroups 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 eGroup. 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 discussion is lively and busy - messages

get sent in from all over the world at an alarming speed. In August, not 20 minutes went by without somebody sending in a message. Indeed, three messages came in the time it took me to write this!
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 who 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 eGroup 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.egroups.com/group/nps.
For further questions, contact

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

Medical Committee Update

Submitted by: HeideMarie McAlister-Bates

The NPSW Med committee has been hard at work, rewriting and formatting a brochure that was originally started in January of this year. Thanks to Carol Dobbins and many other members of the NPS eGroup for laying the foundation on which the existing brochure is built upon.
This brochure contains information for not only other NPSers, but for health care providers as well. Orthopedics are highlighted, but the brochure covers
all systems affected by NPS. There will be email and snail mail contact addresses provided for any additional questions the reader may have.
Also in the works is an NPS symptom registry, an entirely voluntary list of
signs and symptoms derived from a questionnaire that is currently in
development. This registry will assist researchers in determining which
symptoms may be related to NPS, and which are not. This registry is in the
embryonic stage at the moment, but should prove to be invaluable in future.

Updates on Birth family searches Submitted by Patti Haldi

Welcome to our first update of birth family searches for our Newsletter. As you read through the names in this section, please remember to tell friends and family if anything may sound familiar. Included with each name will be an email address to contact. I wish everyone luck in finding their family member(s)

Patricia L. Haldi- (Patti)

Birth date: Dec.27,1952

Birth name: Victoria Lucille Deason Nationality: Unknown-possibly French/Irish Adopted name: Patricia Louise Marrokal Mother and age: Mary Louise LaVelle-24 Father and age: James Harris-28 Mother married to: Edward Deason Hospital: Trumbull Memorial Hospital City: Warren, Ohio Email address: phaldi@msn.com

2.Celeste Chandler-

Birthdate: Aug.26,1951 Birthname: Celestia Maria Joaquin Nationality: father- Portuguese mother-Scotch-Irish Adopted name: Celeste Marie Olson Mother and age: ? Marilyn Haight-27? Details Sketchy) Father & age: Frank or Joseph Joaquin-27-30 Hospital: Born at home City: San Leandro, California Alameda County (San Francisco Bay Area on Oakley/Berkely side) Email address: greg.chandler@worldnet@att.net

Finally Christine offers some good advice on what steps you can take to find birth family. She called the County where her birth mother was born in. She received the birth certificate with her birthmothers full name, birth date , her parents names and that she was second born. She then got the Grandparents birth information too. Since it was a rural area, the lady gladly found when she was married and to who but that was after Christine was born. Christine also leaves these words for thought about adoption: “ I am not out to replace the parents I have now. I am not out to collect anything from these people, nor judge them. Call it curiosity but it is also for health information. I respect these people for their choice, for I am here and was raised in a very loving, good family. Because of this, I care about them because they did this for me and I thank them.” Very Wise words Christine.. Thank you.. Anyone wanting to add information or ideas to the birth family search section of our Newsletter, please email me at Phaldi@msn.com

News from East Kilbride

Submitted by Carol Dobbins

For me, the most difficult part of raising awareness, and gaining public attention, is thinking about it. The same can be said for raising funds.

The first step for me was to sit down and construct a viable plan, not to be too impatient and to set realistic goals. After all, Rome wasn’t built in a day and taking small steps first rather than giant strides will likely have a much more positive effect on the final result.

It was always my intention in raising funds to include the coverage of the newspapers. That way we were going to achieve two vital functions of the group in unity.

Many rainy Scottish evenings, I would ponder over where to start. I spoke it over with my young friend Lisa who has some wonderful ideas. The first thing that came to mind was organizing a “raffle”.

Once the seed was sown, I knew that I would have to plan how the raffle should be co-coordinated. I would have to decide what the prizes would be, when the draw for the “raffle” would take place and where it would take place. I would need to organize a date, time and make sure that there were witnesses present to watch all that was taking place. Then, I would have to work out how to collect the money and who to approach.

Decisions were made relatively quickly and Lisa donated her mountain bike as first prize. This was a bike given to her by her grandmother and she used it one day. I had a bottle of whisky in the house that I won in a raffle, so that was second prize and we have a huge cuddly Lion soft toy that was never used as a third prize. I decided that I would print out a sheet that would include a small note of what NPS is and include the prizes, when the draw will take place and added the websites for further information. The next step was to buy a raffle ticket book and each person would give a pound and receive a raffle ticket number, sign their name and contact number on the copy. They would also fill out a separate sheet that I created with their raffle ticket number, name, address and telephone number. The draw for the raffle will take place on the 16^th of September. I asked many people to take it into their places of work to hopefully get some more help. This has been incredibly successful, far more than I had anticipated and already to date, we have reached a grand total of £232.

As this was so successful I decided that more fundraising would be needed. I am, at present, gathering books, videos, toys, games and generally all household items to sell at a “stall” in East Kilbride. I have roped in a good team for this and I have a good feeling that it will be a great success. We will print out copies of information to take with us about NPS, just in case anyone may want to learn more. My daughter, Nicola and her little friend want to sell cakes and Lisa will do face-painting. I will, hopefully, be collecting money for our much needed funds. I should be organizing this event for the end of September or the beginning of October.

The next thing is booked and finalized for the 18^th of November. This will be much more complicated and more involved than the other two. I hope to organize a “Disco” with games and raffles all evening. I was incredibly fortunate to get the function suite free of charge and the Disc Jockey at no cost either. My friends and neighbors will help with the buffet. At this moment in time, I am working on how I should decorate the room for our guests. I can get as many people as 110, so I will be hoping to get a large number with a ticket fee of £5.

I also want to put out literature for the people who come to allow them to learn the importance of what we are doing, in very informal surroundings. I have asked for the landlady’s permission for me to invite the press and she is more than willing.

The other ongoing fundraising project is one I call “saving pennies”. It is really successful and is so easy to organize. I have a little bank to put the cash into and money bags to sort the correct amounts of money into, and that is all that is needed. I also told many people about this idea and they also now collect and pass it onto me to put into the funds. We have raised about $100 so far.

I was also so pleased to donate one of my paintings to be auctioned at the conference. I think this is a nice idea because it is very personal and I was astonished to hear that it put $85 into our funds.

Working on the “Poetry Book” was a wonderful experience also. I feel that it was something that allowed many people who enjoy writing to express themselves in a very unique fashion. For me, it was extremely therapeutic and allowed me to face many past experiences in a wonderful way.

Facing the newspapers was always going to be a bit more difficult. I was not sure for a while whether or not it was actually something that I wanted to do. Once I had decided that I wanted to go ahead, then I seen no reason not to go ahead then and there.

I felt that contacting the local newspapers was a good way to start the publicity. I always hoped that by doing this, then the larger newspapers would want to become involved also.

I began by emailing the editor of the East Kilbride News, which is a very popular newspaper. I knew that if they would show an interest in the story, we could at least allow the local community to share in our knowledge of NPS and hope for some feedback. Within twenty-four hours, I received a reply and a reporter and photographer arrived at my home two days later. It was a reasonably informal meeting and I gathered all the NPS material that I have and laid it all out for her to see. I gave our story, had some pictures taken and hoped for the best. The next issue of the East Kilbride News carried the story and I was inundated with phone calls. I had never anticipated this type of reaction from the general public. The next important issue was to allow the NPS group to read it online, so a link was found and the editor was thanked from all over the world. This had an incredible effect on the editor who allowed a follow-up story to be carried out in the next issue of the paper. I felt that it was essential for me to thank the people involved and decided to meet him in person. He was extremely kind and showed a great deal of understanding about the need for the urgent appeal.

From the moment of the first article, the pace at which the publicity grew was tremendous. The press agency intended to assist me in getting the appeal out to the national newspapers. The success of the campaign went beyond my wildest dreams. “The Scotland on Sunday” were interested, so the story was submitted. The press agency arrived at the house and took more pictures and details for their own records. Two days later “The Scotland on Sunday” carried a small story. It was the most incredible feeling of accomplishment. The following day “The Scottish Daily Express” carried a much more detailed account and a few days later, “The Evening Times” printed a much more detailed account over two papers and also a picture on the front page.

My aims now are to get it to all countries. There is no point in the Scottish people being educated about NPS and the rest of the world still remains ignorant to all the recent information that we now have. I still have a lady working on the women’s magazines for us and I hope to hear some positive news from this. I have never in my entire life felt so much alive. I feel so lucky to be able to be in a position to do all this. I do it because I WANT to do it. I have found people in our group who I honestly love and care for very deeply and I simply want to help. I think of the people who have kidney complications and the children who may face so much ignorance due to the lack of information that is available for us all. I feel we need to make a stand. We are entitled to the medical care that others receive.

At present, I am working on numerous projects with other members of our group and it is so fulfilling to see it all coming together. I plan to do lots more.

Fundraising

Submitted by Joanne

We have a bank account, so let the fundraising begin! Or perhaps I should say continue. The fundraising committee has certainly been active! Since the conference, we have raised a lot of money. Carol Dobbins continues to be the most creative member. She alone has already raised well over $300.00 for our cause! Laura also has been very active having had a very successful bake sale. Roy made many rocking chairs out of clothes pins, which were sold at the conference.

I think the key to fundraising is creativity. These people have certainly demonstrated this! Thank you Roy, Carol & Laura! Lots of other projects are in the planning stages, and we look forward to hearing about the results of those endeavors.

We have also been fortunate to receive some larger donations. Alcon, a ophthalmological pharmaceutical company, donated money to cover the costs of our recent conference. We also were given a large photocopier. This will certainly help in copying medical brochures, conference brochures and even this newsletter! In addition, we received a large donation from a NPSer's family member. Many thanks to the individuals who helped to make these happen.

Very shortly, the conference videos will be distributed. This also will help to raise money for our organization. The cost for the videos will be $15.00 (to those distributed in the U.S. and Canada). There will be a slightly higher charge for those outside North America due to postage and video transferring costs. If you have already signed up for one, you should be receiving it soon, if you wish to receive one, please let Joanne (amacrine@msn.com) know as soon as possible.

Other bigger projects are in the planning stages. We are looking for a corporate sponsor for the conference to be held in California. In exchange for sponsoring the conference, companies can have their name printed on the conference brochure. A win, win situation for all of us!

Our goal at this time is to use any money raised to increase awareness of NPS. We are already involved in the publication of a medical brochure for both patients and health care professionals. Of course, we will also be very involved in the planning for the upcoming conference. We have loftier goals, but realize that we need to establish a good basis first.

If you have any fundraising ideas you would like to share with the group, please let me know. If you would like to plan a fundraiser, and don't know how to start, we would be glad to give you some pointers. All donations made to Nail Patella Syndrome Worldwide are tax deductible and a receipt will be issued.

Thank you all for your help and support.

NPSW Contacts

Finance – Joanne Mansour amacrine@msn.com

Medical- Heidi Bates sassy65@earthlink.net

Web Page- Carol Glenn Kayro@enid.com

Conference- Denise Cline guardian@qnet.com

NPSW Website www.nailpatella.org

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DISCLAIMER: These materials are for informational purposes only, and are intended to provide you with reliable and timely health information. It is not our aim to provide health advice or counseling, which should be sought from a licensed health care practitioner or health care organization.