In addition to helping fund research and families through the Sturge-Weber Foundation, we have committed to granting two wishes for children here in Wisconsin, a commitment of $10,000.

Last year, we were able to raise nearly $24,000 through the golf outing and thanks to tremendous support from our sponsors and the community.  This year, our goal is to achieve $30,000 in total funding, all of which is donated to our partner charities.  We do not keep a single dime!

We have some amazing and exciting news regarding the growth of the golf outing for 2o13, and look forward to making this year better than last!  Please stay tuned for updates, and be sure to sign up to golf or sponsor using the links above.

Thank you so much for your generosity and kindness.

The 2013 Benefit Golf Outing will be held Monday, May 13th at Bishops Bay Country Club in Middleton, WI. Read more info on the our Golf Outing page above.

You can sign up to golf by clicking here.

AJ Lund

FROM AJ’S PARENTS:

On December 22, 2008, we became the proud parents of Allen Joshua (AJ) Lund.  As first time parents, we had a lot to learn, even moreso when it was explained to us the birthmark on the right side of AJ’s head and face was actually a Port Wine Stain.  We were told AJ would need to see special doctors, and we immediately began our search for the best doctors available.

Through a referral from a family friend, we found a fabulous dermatologist at Children’s Hospital of Wisconsin, in Milwaukee, who specializes in pediatric birthmarks.  AJ has had eleven laser surgeries to lighten his birthmark, and we’re thrilled with the progress he’s made thus far.  He has also had several procedures with a pediatric ophthalmologist due to the involvement of the Port Wine Stain in and around his right eye.   Fortunately, AJ’s eye pressure levels have been in the normal range and he does not have glaucoma.

However, on August 1, 2010, AJ had a series of seizures and was flown by Flight for Life to Children’s Hospital where he was diagnosed with Sturge-Weber Syndrome.  Our lives were turned completely upside down!  Doctors experimented with different medications, and after a week, we were told that SWS is a progressive disorder and AJ’s case was referred to as a “hard control”.  After two weeks at Children’s, AJ went home on Phenobarbital and Keppra, yet we were told he would not be able to remain seizure-free on medications alone.  Doctors at Children’s Hospital believed AJ would need a hemispherectomy in order to effectively stop the seizures.

Courtesy AJ's Caring Bridge website.

We were scared and uncertain, not knowing what the future would hold, but we knew we had work to do to help AJ fight his battle.  We began a second-opinion search for the best facilities and doctors in America.  After extensive research, and with help from the Sturge-Weber and Hemispherectomy Foundations, we sought opinions from two other top-notch medical facilities. We made the most important decision of our lives in choosing Cleveland Clinic, praying for a miracle.  Thankfully, we came in contact with Dr. Ajay Gupta and Dr. William Bingaman. They studied AJ’s medical records, ran more tests, and determined AJ did not need a hemispherectomy.  Instead, they recommended a temporal/occipital lobectomy.

On January 13, 2011, AJ underwent a successful surgery at Cleveland Clinic without any complications.  After five days in the hospital, we returned home to Janesville, Wisconsin with our smart, energetic, happy-go-lucky little boy.

Courtesy Aj's Caring Bridge Website.

AJ continues to develop normally and has been seizure-free since the surgery.  He has adjusted well to the loss of his left peripheral vision in both eyes, which we knew would happen as a result of the surgery.  Doctors told us AJ will never notice any loss of vision, because he had this procedure done at such a young age.

We traveled back to Cleveland in August for follow-up testing and the doctors said everything looked great.  We can’t thank them enough for the future they’ve given our son!  We are truly blessed!

We feel very fortunate to be AJ’s parents, as he has taught us so much about courage, strength and life on this journey.  Along the way, the support we’ve received from family, friends, and the Sturge-Weber Foundation has been extremely remarkable.  Together we hope to continue to raise awareness of SWS and help AJ and others win this fight. Live Strong!  GO AJ GO!

Helping mama with the leaves. Courtesy AJ's Caring Bridge website.

**UPDATE** AJ is now 3 years old and he has now had 14 laser surgeries.  (At the time the story was written he had 11.)  He also had an eye surgery on 10/17/11 to realign and strengthen his right eye, which had began deviating to the outside after his seizures.  If you want to read more about our journey, go to www.caringbridge.org and type in ‘getbetteraj’.

Wearing an eyepatch helps AJ strengthen his eye. Courtesy Caring Bridge

The Big 1070

Jon will be appearing on Wednesday, May 9th on the Mike Heller Show (weekdays, 3-6PM, 1070AM) to discuss the 2012 golf outing.  The Heller Show broadcast live from Bishop’s Bay last year, but due to a conflicting schedule, can’t be there this year in the afternoon.

Newstalk 1310 WIBA

Jon will also be appearing on Mitch Henck’s show, Outside the Box (weekdays, 8-11AM, 1310AM) on Thursday morning, May 10th, to talk about this year’s golf outing as well.  Both the Heller Show and Outside the Box have been supporters of the Jake Jordan Golf Outing to benefit the Sturge-Weber Foundation, and we gratefully express our heartfelt gratitude once again.

The 2012 Benefit Golf Outing will be held Monday May 14th at Bishops Bay Country Club in Middleton, WI. Read more info on the Jachin Jordan Golf Outing benefitting The Sturge-Weber Foundation page.

You can sign up to golf by clicking here.

NBC 15 ran the following story on Jachin and the origins of the Sturge-Weber Foundation Benefit Golf Outing.

You can read the full article here.