Results of the New Jersey Fund Raiser hosted by the Ruhnke Family March 2, 2007

The fund raiser was held at the Elks Lodge #2394 on March 3rd, 2007. The Elks Lodge exalted ruler was Joseph Feoranz Jr. who helped arrange the use of their hall for Carly’s Birthday Party. Carly is their poster child at the lodge.

The above photo shows from left to right, back row: Annabelle Bozarth is 9months old; Dr. Shunji Tomatsu, Chief Medical Researcher for Morquio Type A;
From left to right, front row: Pablo Degand from Chile is 10yrs.old, Carly Ruhnke is 11yrs.old, Georgia Schuh is 10yrs.old, Sara Van Orden is 9yrs.old, and Maria McClellan is 15yrs.old.

Not pictured was Monika Deutschbaurer, who has a brother with a Morquio child. Although, DNA tests are to come back soon the x-rays confirms it’s probably Morquio.  Since he lives in Poland she decided to come and learn and see for herself.

Dr. Tomatsu did his presentation explaining Morquio adding a new segment that showed videos of patients walking which helps people to understand the difficulties and then Dr. Adriana Montano carried on with her presentation explaining in more depth how they were about to reach the bone with Enzyme Replacement Therapy. Mary Smith spoke briefly about encouraging other families to host fund raisers.

The turn out was more than Carol and Ed Ruhnke could have hoped for, over 200 friends and family turned out to show their support.  Holly, one of Carol’s friends, helped considerably with organizing items for the auction and much more. There were tons of items to choose from with the tickets on sale for different price items all the way up to flooring for your house!  There was a DJ named Rick who was really something and He even was able to get Dr. Tomatsu up on the dance floor!

The food and service were excellent. The tables were decorated with a live beta fish center piece that was given away to the lucky person with a ribbon under the bottom of the chair. This idea was a huge hit with all the children!

Ed was a big help playing personal chauffeur to Dr. Tomatsu and Dr. Adriana Montano, head assistant at his lab at Saint Louis University in Missouri. This was the first time Adriana actually met a child with Morquio. Working in a lab for so many years and finally having the opportunity to meet the parents and children was a wonderful experience, one I’m sure she’ll not soon forget!

All Morquio families had a personal meeting, 30 minutes, with Dr. Tomatsu to able to ask questions and voice any concerns they may have with their own child. Also, pictures were taken with Dr. Tomatsu and each Morquio child.

Thanks to the Ruhnke family and friends this was one focused and tireless effort and one very successful fund raiser! Kudos to all!