Info for PS families

Hi All,

Like my last post said I have much to share, so here is more of my recent good news. I have finally been contacted by Prof. dr. Han Brunner who is conducting research into Pierpont Syndrome. He has given me permission to quote him and refer to his work. So I will include a little tonight. He states: We are a group of clinical and molecular human geneticists at Nijmegen University in Holland and We have recently developed an interest in exploring the molecular causes of the Pierpont syndrome. I have been frantically trying to get things in order to send our DNA to Holland to be included in this study. This coupled with trying to produce a measurable amount of carpentry work and staying home with a sick kid makes me wonder if it is "good news" at this time? Anyway, I have been waiting months to be allowed to participate and we will. And I will say getting 3 blood samples taken, sent to a genetics lab for DNA extraction, and then forwarded to The Netherlands's sounds pretty simple and straight forward doesn't it? There will be more news for other families, who may want to participate in this study, later.

The last piece of good news I had this week was "our" website went online. There is really nothing on it yet because I haven't found time to work with the web designer: Jan Johnson, Ogallala. Nor spend one minute working with "MS Frontpage" the software we are using to design pages, to try and make a page for her to put on the site. There will be more there soon, I hope. I know Jan is working on a "page of links" from info I sent and an "open invitation" for other parents to be able to put photos and info: their favorite links, good news, on the page if they wish. It is in progress. I will put more information from Prof. Brunner on that site soon. So if you want to at least look at a cool logo Jan made visit: WWW.PierpontSyndrome.Com I also put a photo of Makenna there so there is something you will recognize as, "I am here! and Clyde is right there is nothing much else!" My blog will stay my blog, stupid stuff I want to talk about. The PS.com site will be professional and informative for future parents and medical professionals. BUT, the people reading this blog NOW are the ones who will have to make the website what we want it to be! By people reading this NOW I don't just mean the parents of children with PS. I know there are others reading this with some energy, ideas, money and perfectly normal kids. I would never exclude YOU from my club! We will determine how best to explain this syndrome to the world and how it has affected our children and families. And most importantly how to best work with the medical community! The only plan I won't accept (for Makenna) is: we could just 'choose to go away.' I warn you, the medical community would be happy to let us fade away. Not that they don't care. But they have dozens or maybe hundreds of equally pressing issues they could deal with given the time. They won't fight for MY cause until I fight for it and encourage them too! It is starting to sound preachy so I will close. Clyde