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Inspiration through loss

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Anita Day has learned a lot about melanoma since 2002. Back then, she didn’t know that the disease kills one person every hour. But when her father and a family friend died of melanoma in the same year, she began searching for answers. And she hasn’t stopped since.

carmichael-michelle-mug.jpg Carmichael

Day is one of many people who – inspired by a personal tragedy – has formed a non-profit organization that honors the memory of someone lost. At least three such charities have roots in Indiana’s legal community.

Raising awareness

Kate Carmichael’s heart stopped beating before she was born. Her parents, attorneys Michelle and Kepten Carmichael, were distraught – they had gone to the hospital expecting Michelle to deliver a healthy baby girl.

“Most people don’t even know what stillbirth is,” Michelle said. “I didn’t either, until it happened to me.”

Doctors had detected no problems with the pregnancy – the second for the Carmichaels, whose daughter was 20-months old when Kate died. In her hospital room, Michelle cradled Kate in her arms, wondering what had gone wrong. She still wonders today.

The Carmichaels were surprised to learn that few records or data existed about stillbirth. Their frustration at the lack of information is what motivated them to start the Kate Carmichael Stillbirth Program, or Kate Cares. The organization aims to help parents understand and cope with stillbirth and, through the support of Indiana University Health, has begun collecting statistics about stillbirth so that others may someday have the answers the Carmichaels never will.

Day – a founder of Outrun the Sun – was frustrated when she learned how few treatments existed for melanoma. She said a lack of public awareness about this potentially deadly, yet preventable, cancer may be why more treatments are not available. She, along with her sister and cofounder Jonna Kane MacDougall, were determined to raise funds for melanoma research after losing their father and a family friend to the disease.

“Once you have awareness, then you can have education, and once you educate, then people understand the magnitude of the situation; once they understand the magnitude of the situation, then support and funding follows,” Day said.

Raising awareness was one of the goals Vivian and attorney John Maley had in mind when they founded the Joseph Maley Foundation, named in honor of their son, who died at the age of 18.

“Joseph, our oldest son, had a myriad of disabilities and four younger brothers who lived a quote-unquote normal life,” Vivian said. “To them, there was nothing out of the ordinary. And yet, they saw it wasn’t that way when we would go places. They knew that somehow, they were looked at differently.”

The children recognized a need to educate the public.

“It was Tony who said 11 years ago, ‘Mom we’ve got to do something about teaching people about disabilities,’” Vivian recalled.

What they do

Day’s husband was a good friend of another Outrun the Sun cofounder, Jenny Patton Sarno, whose husband, Gary Patton, died of melanoma in 2002 at age 38. The same disease killed Day’s and MacDougall’s father, John Busse, just 11 days earlier.

“As our two families kind of went down this path together, and we shared our challenges and frustrations, it became very apparent that melanoma needed to have some strong force behind it,” Day said. She said that the founders realized that hosting a large community event would bring attention to the cause. They had seen how the Susan G. Komen Foundation had grown from a small grassroots charity to a global leader in breast cancer research after starting its annual race, Susan G. Komen for the Cure.

outrun-the-sun-back-15col.jpg A runner wears a sign in honor of her sister at 2010’s Outrun the Sun. The annual race raises funds for melanoma research. (Photo courtesy Outrun The Sun)

“We started with a simple idea for having a run/walk – it was at least a way to get awareness out,” Day said. The first year, they expected maybe 200 or 300 entrants in the race, and they were stunned, she said, that 1,600 people participated, which amounted to about $50,000 raised for melanoma research. This year, the race will be on June 4 at Fort Benjamin Harrison in Indianapolis.

The Carmichaels have raised $280,000 for stillbirth research, creating a fund through the Riley Children’s Foundation in 2003 that accepted donations in Kate’s name. The donations allowed them to launch the non-profit organization in 2006.

Michelle said that doctors may handle stillbirth cases differently in different parts of the state. Especially at smaller hospitals, the technology and resources may not be sufficient to conduct a thorough autopsy and take tissue samples that could help determine a child’s cause of death. Sometimes, she said, a baby born still may be whisked away by staff before the mother even sees the child, which Michelle thinks is a disservice to any family. She is thankful that her husband had the strength and foresight to take photos of Kate, so that they can remember her. She keeps the photos in a large white scrapbook, filled with cards and letters from friends.

The Carmichaels received a $70,000 grant from the Clarian Health Values Fund for the production of DVD’s that demystify stillbirth for medical professionals and families. They hope that the DVD’s will help spread the word about the need for stillbirth research; currently, the Kate Cares program is in place in all Indiana University hospitals, and St. Francis Hospital.

“We will help any hospital that wants to jump on board,” Michelle said.

The Joseph Maley Foundation, Vivian said, aims to teach children of all abilities about the importance of helping others.

“Because we have all kinds of children in our life, we really didn’t want to serve or concentrate on one group of children,” she said. But the foundation does work with young people to teach them how difficult life can be for someone who has limited physical or mental abilities.

charities“We have a curriculum, pre-K all the way through eighth grade – by the time they reach eighth grade, they take on a disability,” she said. “They know which disability they’re going to take on, but we try to keep it random. We try to get across that your life can change at any moment.”

Students who participate in the program may – as their final project – spend a day in a wheelchair, or they may have to figure out how to cope with some other physical or mental limitation. Afterward, students participate in a type of exit interview and are asked to share their views about the experience.

The Maley Foundation also travels to schools to produce puppet shows that teach children about disabilities. The shows – along with much of the public service work the foundation engages in – are performed by children. The foundation also hosts an annual 5K Run/Walk/Roll, which will be July 9 this year.

Future plans

Day said that because of funds raised from the annual race, they’ve been able to support researchers who are working toward treating melanoma. Outrun the Sun has begun exploring how to work with other cities to set up annual races, and it is working with USA Track & Field to reach its more than 100,000 members – people who are at higher risk of melanoma due to their exposure to the sun.

Vivian said that she wants to expand their disability awareness programs into more schools and make school officials aware that they can ask for components of the program that suit their needs.

Michelle hopes that Kate Cares may eventually become fully endowed so it can be self-sustaining. With little revenue, the organization can afford only one part-time employee. Kate Cares relies heavily on the doctors and nurses at IU Health who volunteer their time to help put together a clearinghouse of stillbirth data.

But equally important to her is that people begin to change their view of stillbirth.

“It’s dealing with babies, and it’s dealing with death, and people aren’t comfortable talking about it,” she said. “That’s not typically how life is supposed to work.”•
 

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  • Outrun the Sun
    I was diagnosed with malignant melanoma in December 2010. My cancer was located on my lower left calf. I have been looking forward to this year's event since I came home from my surgery. It is a marker of not only how far I've come in my recovery but also how far we need to go to raise awareness of this potentially fatal cancer. Kudos to Anita & Jenny!

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  1. I like the concept. Seems like a good idea and really inexpensive to manage.

  2. I don't agree that this is an extreme case. There are more of these people than you realize - people that are vindictive and/or with psychological issues have clogged the system with baseless suits that are costly to the defendant and to taxpayers. Restricting repeat offenders from further abusing the system is not akin to restricting their freedon, but to protecting their victims, and the court system, from allowing them unfettered access. From the Supreme Court opinion "he has burdened the opposing party and the courts of this state at every level with massive, confusing, disorganized, defective, repetitive, and often meritless filings."

  3. So, if you cry wolf one too many times courts may "restrict" your ability to pursue legal action? Also, why is document production equated with wealth? Anyone can "produce probably tens of thousands of pages of filings" if they have a public library card. I understand this is an extreme case, but our Supreme Court really got this one wrong.

  4. He called our nation a nation of cowards because we didn't want to talk about race. That was a cheap shot coming from the top cop. The man who decides who gets the federal government indicts. Wow. Not a gentleman if that is the measure. More importantly, this insult delivered as we all understand, to white people-- without him or anybody needing to explain that is precisely what he meant-- but this is an insult to timid white persons who fear the government and don't want to say anything about race for fear of being accused a racist. With all the legal heat that can come down on somebody if they say something which can be construed by a prosecutor like Mr Holder as racist, is it any wonder white people-- that's who he meant obviously-- is there any surprise that white people don't want to talk about race? And as lawyers we have even less freedom lest our remarks be considered violations of the rules. Mr Holder also demonstrated his bias by publically visiting with the family of the young man who was killed by a police offering in the line of duty, which was a very strong indicator of bias agains the offer who is under investigation, and was a failure to lead properly by letting his investigators do their job without him predetermining the proper outcome. He also has potentially biased the jury pool. All in all this worsens race relations by feeding into the perception shared by whites as well as blacks that justice will not be impartial. I will say this much, I do not blame Obama for all of HOlder's missteps. Obama has done a lot of things to stay above the fray and try and be a leader for all Americans. Maybe he should have reigned Holder in some but Obama's got his hands full with other problelms. Oh did I mention HOlder is a bank crony who will probably get a job in a silkstocking law firm working for millions of bucks a year defending bankers whom he didn't have the integrity or courage to hold to account for their acts of fraud on the United States, other financial institutions, and the people. His tenure will be regarded by history as a failure of leadership at one of the most important jobs in our nation. Finally and most importantly besides him insulting the public and letting off the big financial cheats, he has been at the forefront of over-prosecuting the secrecy laws to punish whistleblowers and chill free speech. What has Holder done to vindicate the rights of privacy of the American public against the illegal snooping of the NSA? He could have charged NSA personnel with violations of law for their warrantless wiretapping which has been done millions of times and instead he did not persecute a single soul. That is a defalcation of historical proportions and it signals to the public that the government DOJ under him was not willing to do a damn thing to protect the public against the rapid growth of the illegal surveillance state. Who else could have done this? Nobody. And for that omission Obama deserves the blame too. Here were are sliding into a police state and Eric Holder made it go all the faster.

  5. JOE CLAYPOOL candidate for Superior Court in Harrison County - Indiana This candidate is misleading voters to think he is a Judge by putting Elect Judge Joe Claypool on his campaign literature. paragraphs 2 and 9 below clearly indicate this injustice to voting public to gain employment. What can we do? Indiana Code - Section 35-43-5-3: Deception (a) A person who: (1) being an officer, manager, or other person participating in the direction of a credit institution, knowingly or intentionally receives or permits the receipt of a deposit or other investment, knowing that the institution is insolvent; (2) knowingly or intentionally makes a false or misleading written statement with intent to obtain property, employment, or an educational opportunity; (3) misapplies entrusted property, property of a governmental entity, or property of a credit institution in a manner that the person knows is unlawful or that the person knows involves substantial risk of loss or detriment to either the owner of the property or to a person for whose benefit the property was entrusted; (4) knowingly or intentionally, in the regular course of business, either: (A) uses or possesses for use a false weight or measure or other device for falsely determining or recording the quality or quantity of any commodity; or (B) sells, offers, or displays for sale or delivers less than the represented quality or quantity of any commodity; (5) with intent to defraud another person furnishing electricity, gas, water, telecommunication, or any other utility service, avoids a lawful charge for that service by scheme or device or by tampering with facilities or equipment of the person furnishing the service; (6) with intent to defraud, misrepresents the identity of the person or another person or the identity or quality of property; (7) with intent to defraud an owner of a coin machine, deposits a slug in that machine; (8) with intent to enable the person or another person to deposit a slug in a coin machine, makes, possesses, or disposes of a slug; (9) disseminates to the public an advertisement that the person knows is false, misleading, or deceptive, with intent to promote the purchase or sale of property or the acceptance of employment;

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