Great post-event article about the PHF Benefit Concert this past Saturday in Detroit, Michigan starring Teen Nation Tour, which raised $3,330+ for Hydrocephalus Research!

DETROIT, MI- Employees of one of General Motors Co.’s largest Michigan production facilities are rallying together to help raise awareness of an incurable disorder that is impacting one of their fellow employees and his family.

Hawke Adams, 5-year-old son of quality engineer Jason Adams at GM Detroit-Hamtramck Assembly, has hydrocephalus – a disorder that causes excessive accumulation of fluid in the brain that creates harmful pressure that can be fatal.

“It’s real personal to me,” said Jason Adams, who also serves as co-director of the Pediatric Hydrocephalus Foundation. “So, the plant leadership, UAW and GM as a whole got behind the idea of, ‘let’s do something.’ ”

As part of a monthly “diversity initiative” program, workers and plant leadership decided to help sponsor a benefit concert with the “Teen Nation Tour” in an effort to help raise awareness of the disorder, which has already caused Hawke to have 10 brain surgeries.

Doneen McDowell, Detroit-Hamtramck plant manager, said once hearing about Hawke, the Diversity Initiative team felt the concert was a great opportunity to help.

We wanted to figure out a way we could support Jason because he does a lot for the Pediatric Hydrocephalus Foundation,” she said. “Not only because his son has it, but he’s developed a connection with other families that have it.

“We felt a connection the minute he started talking about it.”

The concert, which features a number of young singers, is scheduled for 7 p.m. Saturday at the UAW-GM Center for Human Resources, 200 Walker St. in Detroit. Doors open at 5:30 p.m., followed by a special red carpet entrance by the performers at 6 p.m. and a VIP meet-and-greet at 6:30 p.m.

Tickets are still available starting at $5 for children 6-12 years old and $10 for adults and VIP tickets to meet the performers. Children under 6 years old are free. For tickets, call 810-441-9170 or email Jason.Adams@gm.com.

Proceeds from the “Teen Nation Tour” concert will go toward the Pediatric Hydrocephalus Foundation, which Jason Adams and others also annually lobby for on Capitol Hill.

Performers include former “X Factor” contestant J Ryan, 14, of San Antonio, Texas; Tristan Blaine, 14, of Frisco, Texas; Nic Neufeld, 11, of Dodsland, Saskatchewan; Faith Marie Shirley, 15 of San Antonio, Texas; Collin Kozola, 17, of Naperville, Illinois, Katie Akin, 14, of Atlanta, GA; and Kaity Floyd, 20, of Dallas.

The number of people who develop hydrocephalus or who are currently living with it is difficult to establish since the condition occurs in children and adults, and can develop later in life. Some estimates report one to two of every 1,000 babies are born with hydrocephalus.

For more information on the Pediatric Hydrocephalus Foundation, or to donate, visit hydrocephaluskids.org.

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PHF Michigan State Chapter Co-Director’s Jason & Carmen Adams and Donna West are featured in the September Issue of The Altum Advocate

The PHF’s Michael Illions, Vice-President & Director of Advocacy, & Jason Adams, PHF Michigan State CO-Director, attended the Rare Disease Lobby Day & Conference last week in Washington DC.

Michael met with staffers from Senator Robert Menendez & Congressman Rush Holt’s office, and personally with Congressman Leonard Lance, while Jason met with staffers from Congressman Mike Rogers, Congresswoman Candice Miller & Senator Carl Levin’s office.

When presented with an opportunity to write about her favorite hero in a State-wide 8th grade school essay contest, 13 year old Hanna Adams didn’t need to look any further then her own 4 year old cousin Hawke Adams, who has had 11 Hydrocephalus related brain surgeries, as her “Personal Michigan Hero”.

Hanna’s essay was one of the top 3 chosen in her school, then named the overall winner, and now goes on to the State Finals!

And now to the story!!:

By Hanna Adams

When you hear the word hero, I bet you think of a guy with a cape on in a comic book or on TV? I did until my little cousin Hawke was born on May 14th, 2008. Hawke and his twin brother Jaxon were first pronounced dead at birth. Doctors had to make many resuscitation attempts to revive both boys. Finally after twelve long minutes, Hawke took his first breath! Sadly Jaxon did not survive.

During the resuscitation attempts, a hemorrhage formed in Hawke’s brain causing Hydrocephalus. Hydrocephalus is a rare condition where there is an excessive amount of fluid that builds up in the brain. Doctors, then figured out they had needed to place a shunt in his head, to help drain the excess fluid that builds up in his brain. Unfortunately for Hawke, this would not be the only surgery he would have to have done. He has had a total of fourteen brain surgeries due to shunt failure.

Hawke has spent two of his four birthdays in the hospital, within these four years Hawke has had to go through a lot, not only all the surgeries on his head but he has had to get corrective eye surgery done twice. He also has to go to therapy for his motor skills. Hawke wears braces on his legs and has to use a special walker to help him get around.

Amazingly enough, I have to say that I have never seen such a courageous boy! He comes out of all the surgeries and everything else that he continuously has to go through and yet every time he has a smile on his face! I remember just recently I had to get my tonsils out and I was really scared, and all I could think about was how scared he must have been, I believe that just thinking of him helped me not to be so scared of the surgery.

When I look at my little cousin I see such a strong brave boy. Hawke is a very Kind, Sweet, Spectacular little boy! And he definitely puts up a good fight. Hawke may have some challenges but don’t let that fool you cause he is bound and determined to prove all the doctors wrong. He loves playing with his baby brother, Canyon, and his older sisters, Alani and Jacie. He has an amazing spirit and is simply an inspiration to all.