Love Never Sinks

A Lesch-Nyhan Syndrome Support and Advocacy Group

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It is with a heavy heart that we announce the passing of 5 year old Jasper.  In a nationwide tribute, we'd love for you to join us at 1:45 Central Time on Saturday, September 6, 2014 (shortly after his memorial service) to release "Balloons for Bubba".  Be sure to video tape the releasing of your Blue, Red and White balloons and share on the Lesch Nyhan Syndrome Facebook Group ...

On Saturday afternoon we had a roundtable discussion. We received great advice and ideas from the parents and other people experienced with the day to day care of LNS patients.

The main areas that we discussed were respite care, restraints, behavior, sleeping and therapy. 

Respite Care and Home Health Care

In the area of respite care and home health needs Michelle Lucas shared her wisdom and insight on what resources are provided by the state or local...

Dr. Cooper from the University of Iowa joined the group on Saturday, August 24. Dr. Cooper is a wonderful man and a caring doctor. His specialty is urology. He has worked with multiple families with LNS, he is and will continue to be a great advocate for LNS.

He took the time to speak with each family about their kidney needs and how that effects urine in LNS patients. He encouraged us greatly on our journey with Love Never Sinks and especially to the families that attended the conferen...

Dr William Nyhan, the discoverer of Lesch-Nyhan participted in the conference on Friday, Aug 23, 2013.

He informed us of an upcoming trip he is taking to Italy where he will be attending a conference regarding a medicine that may help with some of the purine salvage with LNS. It is a medicine that they are currently testing on cancer patients and Dr Nyhan hopes that...

The conference was a wonderful success! We had eight families join us! They came from Minnesota, Ohio, North Carolina, Iowa, Illinois, Missouri and Oklahoma! It was a pleasure to meet everyone and a trhill to see so many LNS boys together in one place!

On Thursday night we greeted everyone with a pizza party and a few of us took at dip in the pool at the home of Michelle and David Lucas. The whole weekend owes a huge thank you to both of them for all of their generosity, kindness and fo...

This conference is coming up this week!

We are so excited and thrilled to meet everyone this coming weekend!

We would love to have everyone bring pictures of your boys and families. We will have a board to post them and would truly be honored to be able to add some pictures to this website!

Please feel free to contact us if you have any questions or concerns about this weekend!

Many blessings and safe travels!

Hello!

The Meet and Greet Conference is coming in just two weeks! We are so excited about this venture, about being able to be a part of the Lesch-Nyhan Community and especially about meeting everyone! As a reminder, the events will all be held August 22-25, 2013 in Clarksville IA. 

The itinerary will be flexible, relaxed and fun:

Thursday Aug. 22    Anytime after 4:00 Pizza Party at the home of Michelle and David Lucas 508 W Jefferson St Clarksville IA 50619 ...

The bracelets have arrived! Michelle says they look awesome!

We are asking for a $3.00 donation for each bracelet and $.25 for shipping.

This fundraiser will greatly help with the start up of our foundation and to help our Meet and Greet Conference be a success!

The process is simple and quick, please just go to the Web Store tab, click on donate and follow the directions.

We thank you in advance for your generosity! May each and every one of you be infinitely bless...

Love Never Sinks is proud to announce Dr. Nyhan is coming to our get together on Friday August 23rd, 2013! He will provide wonderful amounts of information for you and your beautiful kids.

Also, please come to meet Dr. Cooper, a Urologist who has cared for Lesch-Nyhan patients. He will assist with all of your urine, uric acid and kidney questions.

Michelle Lucas will be on hand to discuss and assist you with your home healthcare needs and questions.

Some meals will ...

Things have really started to get rolling for Love Never Sinks! We have ordered some bracelets, which you can see on the photos page. We are so excited to show off our new logo that was so generously donated to us! LNS T-shirts are also in the midst of getting created and we hope to have them available for sale at the Kick Off Meet and Greet in Clarksville IA August 22-25.