Diane Moore

Diane and Colleen

Raleigh, NC   In September 2007, her eight-year-old daughter Colleen's persistent knee pain sent Diane Moore to yet another doctor's visit to try to determine the source of the pain. As they were once again leaving without answers, the doctor decided to try one more thing, an x-ray of the thigh area. Sure enough, there was a sizable lesion. Continued testing produced a diagnosis of stage IV osteosarcoma. It had metastasized to her lungs, along with her left knee, her pelvic bone, her spine, her right shoulder, and a rib. She would almost surely die in nine to twelve months.

Over the next eight months, Colleen was seen at three different medical centers. Although the medical care she received was good, the emotional and spiritual support was inadequate, inconsistent, and at times, nonexistent. In the beginning, there was good support, help for both Colleen and her parents as they navigated the scary and painful world of cancer treatments. There was play therapy, support groups and a chaplain who checked in on them regularly.

In December, tests showed that the cancer had spread to every growth plate in Colleen's body, and they began treatment at a different hospital. Here there were no support groups, no therapy for Colleen, no visits from the chaplain—they were on their own. Diane looked into why a private hospital had no resources and found it was a matter of funding and not making it a priority.

In late May, the doctors told the Moores there was nothing more they could do. Diane says, A couple of weeks before she died, the doctor had told us that it was time to tell her that the doctors and nurses couldn’t help her anymore. I needed to tell her that we had to cancel her Make-a-Wish trip. I needed to tell her that the only way for her to feel better was to go to heaven and be healed. Even on this horrible day, we were not provided any support services.

Colleen died on June 9, 2008.

After Colleen's death, Diane began researching the issue of emotional and spiritual support for sick children. She found that most hospitals that excel in this area are funded by donors. Insurance generally doesn't pay for these services. Her research led her to start Striving for More, Inc, a 501(c)(3) nonproft. Their mission is ensuring that children with cancer and their families receive quality emotional and spiritual support.

Striving for More works in the areas of educating the public as well as raising money for cancer support programs. They have speakers available to talk to groups and clubs to help people understand the need for this kind of support.  And since its inception, Striving for More has raised over $115,000 which is used to support programs in several areas including
•fully funding the Beads of Courage programs at both Duke and UNC, a beautiful way for children and their families to chronicle their brave journey through cancer treatment.
•donations of more than a thousand books to caregivers and providing Care Kits to each newly diagnosed family with items that will for comfort and care during their first hospital admission.
•donations of electronics and books needed by the Child Life Specialists and Art Therapists at Duke and UNC to work with the children.
•providing Virtual Reality systems that help children forget that they are having scary or painful procedures performed and instead escape into magical worlds.
•committing funding of medical therapy aids such as Medical Play Dolls, Chemo Ducks and the development of a Treatment Room Mural
•committing full funding for the Patient Support Groups that take place at both Duke and UNC Hospitals.
•leading the Triangle Childhood Cancer Support Group and associated Community Based Programs that support the family through events that take place outside of the hospital.


Whenever possible, Striving for More seeks to partner with other nonprofits who are seeking to help children with cancer. This is demonstrated through their strong partnership with Beads of Courage which they hope to expand in 2011 through the Sibling Support Program. In 2011 they began partnering with Arts for Life by providing them funding so they were able to increase their Arts Programming capacity at Duke.  They also joined forces with the Chemo Duck program to fully fund programs at both Duke and UNC Hospitals going forward.

One of the ways Striving for More adds value is by researching to find the best emotional support programs that are in use in this country. They then bring those programs to the children and the families being treated in the Triangle and provide program management and funding.

I did not know Diane when her family was going through this ordeal, but I met her shortly after when we worked together to keep Wright School in the state budget. In the midst of unimaginable grief, she found a way to keep going and to bring comfort to others walking a similar path. A quote attributed to Ambrose Redmoon on Striving for More's Facebook page sums up my feelings about Diane's work after Colleen's death: "Courage is not the absence of fear, but rather the judgment that something else is more important than fear." I am thankful for Diane's courage, her compassion, and her hope that no one should feel alone at such a terrifying time.

Debbie McCarthy

Chapel Hill, NC     So, yeah, I had the idea for the Augustine Literacy Project, way back in 1993. But I was working full-time and then I had a baby, and this great idea limped along for several years. What I really want credit for is that I chaired the new director hiring committee that hired Debbie McCarthy. Good ideas don't just take flight all by themselves; they need someone who can make them soar.

And that would be Debbie. The Augustine Literacy Project is designed to give low-income kids the same quality of literacy tutoring that someone with financial resources might receive at the Hill Center or through a private tutor. The repercussions of illiteracy are staggering, and they continue for generations. Breaking that chain can literally save lives. The ALP addresses this need, one tutor at at time, and one child at a time. The number of volunteer tutors trained are in the hundreds, as are the children served this area and others.

Debbie serves as Executive Director of the Augustine Project in Chapel Hill, the "mother" program that has spun off several replications throughout North Carolina, in South Carolina, and in Texas. She holds twice a year 70 hour trainings for volunteer tutors, alternating between Chapel Hill and Durham, as well as working with the directors of our replication programs. She also oversees two training programs of high school students in local private schools that provide opportunities for service learning for those students. Debbie is the mother of two dyslexic children, now grown and very successful in their fields, so she knows what can happen if a child gets the help he or she needs. She is that rare mixture of a very creative yet organized person, and she brings a passion to her work that is awe-inspiring. I decided to ask her where that comes from:

My friend, Linda, has asked me to write about why I feel so passionately about the Augustine Project.  As I’ve pondered the question, faces come to mind.  The face of Tyrone, my own Augustine student, a sweet, befuddled nine-year-old boy whose back story would buckle your knees.  He could not read a word in fourth grade, but even then, he was the single most responsible person in the daily lives of his five siblings.  Today, twelve years later, he is about to graduate from a Job Corps training program and head out into the world as a productive human being.  Then comes Enrique, an adorably charming first grader at Forest View School whose beautifully expressive face revealed with heart-breaking clarity the anxiety and shame he felt at not being able to read like his classmates.  After months of phonological games and activities (rhyming, hopscotch, bean bags and koosh balls, pictures and toy objects in a drawstring bag, “What’s the first sound you hear in bug…in car…in table?”) the truth dawned in his extremely bright mind:  the English language is made of SOUNDS.  You can tap the sounds apart, smear them together, swoop them into WORDS.  Connect the sounds to LETTERS and “Halleluia!” – written  language is no longer the insurmountable beast, the enemy.  The smile on Enrique’s face as he began to read was a sight I will never forget.  Then there are faces of tutors, committed and compassionate, eager yet apprehensive as training begins, overwhelmed as it continues, and finally confident and joyful as the tutoring takes hold in their lives and the lives of their Augustine students.  The faces of replicators, inspiring and inspired tutors who carry the torch to a new community and bring to light there “the magic” of Orton-Gillingham (of course it happens not magically at all, but through patience and perseverance, through the hard work of structured, systematic, multi-sensory, diagnostic and prescriptive lesson planning).   The faces of trainers and practicum coaches who convene year after year to carry on the work; the faces of donors whose generosity knows no bounds; the faces of board members who faithfully lead; the face of Linda who started it all; the faces of Tracey and Katherine and Heather who have so graciously shouldered with me the harness called “staff;” the faces of Timothy and Clarke, priests of Holy Family Church, where the Project was founded and still resides. Finally, the faces of our own two wonderful, twice exceptional (both gifted and dyslexic) children, now successful adults, who first opened my eyes to the truth that literacy does not always come with ease.  All of these faces are an amazing testimony to the power of the Augustine Literacy Project and its remarkable 18 year track record of teaching at-risk students to read, whether they struggle because of dyslexia, poverty, ESL issues or all three combined.   

I am so blessed to have found in the Augustine Project my professional vocation, which in Frederick Buechner’s words, is “where your own deep joy meets the world’s deep need.”

It should be said that, while the Augustine Project is an outreach ministry of Holy Family Church, the curriculum and instruction offered by Augustine tutors is secular.  We teach economically and academically disadvantaged students in the public school setting to read, write and spell.  Augustine tutors do not proselytize.  Augustine tutors affirm the dignity of every human being by providing compassionate attention and effective literacy intervention without regard to or judgment of an individual’s religious, cultural or personal characteristics.  It should also be said that, from my perspective, the work, the service, the relationships born of the Augustine Project are incarnations of the sacred, enacted on holy ground. 

The Augustine Project has many needs.  They always need tutors – caring, conscientious volunteers who will give up two weeks to be trained and then 60 hours (minimum) of teaching time, paired one-on-one with a low-income, struggling reader.  We always need funders.  Books and materials for a single trainee cost $300, and more and more trainees need scholarship help.  We need a replicator to rise up and start an Augustine chapter in Greensboro.  We need prayers that the Project will continue to thrive and grow.  

I'm on the board of this great endeavor and encourage you to learn more about it. If you want to become an Augustine tutor, make a donation, or just learn more about the ALP, visit  www.augustineproject.org or contact Debbie McCarthy at 919-408-0798 or  augustineproject@msn.com.  

One last word from Debbie: If you have actually read all of this, thank you…and thank God that you know how to read.   

And to that I say, Amen!

Jane Wettach

Durham, NC    The Children’s Law Clinic is a legal project of Duke Law School focused on protecting the health, education, and well-being of children.  The Clinic is staffed by law students who are supervised by two Duke faculty members, Jane Wettach and Brenda Berlin.  The program has the joint mission of providing free legal services to low-income families and providing hands-on opportunities for law students to develop their professional skills.

The Clinic opened in 2002 as part of an expanding program at Duke Law School to offer clinical opportunities to its students.  During the time it has been serving families, it has developed expertise in three main areas of law:  special education law, school discipline law, and children’s disability law.  These areas of law were selected by Jane and Brenda after an extensive assessment of community need.  Especially in the areas of special education and school discipline, they found that few lawyers in the Triangle had the necessary expertise to advise and represent children having these types of legal problems.

Now in its tenth year, the clinic offers free advice and representation to children in 11 counties in the Triangle region.  The law students in the clinic investigate claims such as refusal of a school district to evaluate a child for special education services, failure of a school system to provide appropriate special education services, or imposition of inappropriate discipline to students with disabilities.  They attend IEP (Individualized Education Program) meetings with parents, negotiate with school personnel, and handle due process and state complaint proceedings on behalf of clients.  They also represent children who are facing a long-term suspension from school in appeal proceedings.  Finally, they represent children who are appealing denials of SSI benefits (Supplemental Security Income).   The Children’s Law Clinic does not handle abuse and neglect, juvenile delinquency, or other criminal matters.  It likewise does not handle child custody or personal injury cases.

The need for legal advocates for children is great.  Education law and SSI law are complicated!  While many parents are effective advocates for their children, they often need someone with greater expertise to support them when major disputes occur.  It’s very gratifying when a law student can intervene in a conflict and get it resolved.  Not only does the law student learn advocacy skills, but a child ends up with an improved educational program or a reduced school suspension or benefits that can ease some of the family hardship.  That’s always the goal!

The Clinic is supported by Duke University as well as by donations. Duke prefers donation checks to be written to Duke University, with a memo line notation that it should be directed to the Children’s Law Clinic.  Nevertheless, a check written to the Duke Children’s Law Clinic will be processed and directed to the clinic.  All contributions are tax deductible.

Professional volunteers are needed for specific cases, for specific tasks. Jane and Brenda hope to compile a list of professionals, especially child and educational psychologists and educational consultants – that they could call on for help as needed.  Having several means that no one person is overloaded. They need help with evaluations, observations, file reviews, and suggestions for better and more appropriate services.  They very, very occasionally need someone who is willing to testify in a hearing on behalf of a child (after having done an observation, evaluation, or file review).

The Duke Children's Law Clinic has answered questions about my own children and I've served as a tutor for one of their clients. In addition, Jane and I have served together on the board of the Augustine Project and I've always been so impressed with her knowledge and calm confidence. Educational law IS complicated and not always accessible to those who need it most. I'm very grateful to Jane and Brenda for their passion for these kids.

D.J. Svoboda

Cary, NC When D.J. Svoboda speaks or writes, he makes liberal use of the words Awesome and Incredible and Amazing, which I find contagious. He's a big man with an amazing gentleness and an incredible outlook on life (see?). He is a talented artist who uses his gifts to comfort children who are different and to teach everyone about acceptance and kindness. And he is a person of strong faith who can't contain his joy when talking about it.

When D.J. was three, he was diagnosed with autism spectrum disorder with psychomotor retardation. Psychomotor retardation can cause a visible slowing of physical and emotional reactions, including speech and affect. Because of this, he was often teased and bullied in school. Instead of striking back, he created a world of imaginary friends, the Imagifriends, colorful creatures who are always kind and accepting. Some of them have autism and other disabilities, but no one is ever mean and the friends learn they can have a positive effect on the world in spite of their disabilities. In this wonderful imaginary world, everyone helps and cares for one another. In Imagiville, anything is possible.

As D.J. got older, he became more serious about his art and more passionate about sharing it. Now Imagiville and its inhabitants have become his full-time vocation. So far he has created several thousand Imagifriends, each with its own personality and gifts. The one shown below is the Mupperezmo, a mascot of sorts and the star of a puzzle D.J. did for the Autism Society. The Mupperezmo can see things from different points of view. D.J. has coloring books, notecards, totebags, and mugs for sale on his website. He also custom designs Imaginames, where the whimsical creatures spell out a child's name. D.J. would love to do murals in homes, daycares, schools, pediatricians' offices or dentists' offices. He donates some of his proceeds to the Autism Society and to Hope Community Church, where he is an active member.

D.J., now 29 years old, works as a motivational speaker for autism groups as well as school and camp groups. I first heard him speak at Jordan Lake School of the Arts, which has many students with autism. He brought the kids, including my daughter (shown in the picture with him), a message of encouragement and understanding, and they hung on every word. He wanted them to know that they are okay just the way they are.

I asked D.J. what he wanted our readers to know, especially young readers. He replied, I would like Kids to know that Big, Big Dreams are Never impossible to come true, for they can come true in Great and Powerful and Amazing ways. It is also really Important to always Believe in themselves and to Believe and Expect and Dream Big Everyday. And also that Things can and will get Better and Better.

When asked by another interviewer if he had ever felt bitter towards those who tormented him when he was younger, D.J. answered, I am not bitter because I know that God loves me and made me the way I am. The hard times were difficult but you have to learn from them and go on. If you let them get the best of you, you will become defeated. I made the decision to turn the negative into positive and continue to grow and try to help others learn from what I have been through.

That attitude, along with the joy D.J. brings to the world, is what makes him a hero in MY book.

Julie and Steve Bailey

Chapel Hill, NC These are my friends Julie and Steve Bailey. They took on the challenging task of adopting three beautiful brothers from foster care in 1996. After the adoption, they discovered all three of the children suffered from mental health issues, as well as learning disabilities which resulted in Steve and Julie becoming their greatest advocates. Luckily, the boys came with Medicaid since they were considered special needs adoptions, but when Josh, the oldest, turned 18, he lost that coverage. As the parents of a young adult, the Baileys had no legal standing or say in Josh's life. They were not included in treatment team meetings or decisions any longer despite Josh having given them his Power of Attorney. It was not enough 'power' and their input was ignored by treatment providers and UNC Hospital when he required hospitalizations. Over the course of a year Josh went off his medications, began self-medicating, and a year later walked away from his residential program. In July 2008, Josh was murdered by six acquaintances. The Baileys believe that Josh's mental illness, compounded by a learning disability, affected his judgment and made him vulnerable to this crime.

Even before Josh's murder, Julie had turned the knowledge and experience she gained as the parent of these three guys to good use by becoming a family advocate working in mental health. The day the family filed a missing person's report for Josh, Julie was with me as a parent advocate at my child's treatment team meeting. She never said a word about their fears, though she must have been frantic with worry. She continues to work as an advocate for those with mental illness, presently serving as Associate Director and Interim Executive Director for Mental Health America of the Triangle, where Steve also works part-time.

Julie and Steve knew that young adults at transition times are very vulnerable. For many young adults ages 18-26, there is often a sense of denial about their illness or too much stigma for them to be motivated to seek treatment. Others have aged out of Medicaid or their parents' insurance. Parents are often exhausted by this age and some give up completely when the child becomes a legal adult because the system removes all of their authority while the child's problems escalate. This population has a high rate of self-medicating and can often be compliant resistant to do the right thing, which only causes more problems. The Baileys learned that the treatment system is not very forgiving of this age population and programs are quick to turn them out when they can't comply with rules. Having treatment options that are directed at this demographic is critical, yet few exist. In hope of helping other young people with mental health conditions during these crucial transition times, the Baileys, along with family members and friends, formed Josh's Hope Foundation, Inc., (www.joshshopefoundation.org). The lengthy process to organize began when Josh's godmother, Lynn Giddens, and her son Devin suggested a walk in Josh's memory in 2009, following Steve's development of the website www.justiceforjosh.org. From there it progressed to a federal tax exempt 501(c)(3) non-profit organization approved in 2010.

The mission of Josh's Hope Foundation is twofold:

•To promote public awareness and education on issues and needs of transitioning young adults with mental illness or mental illness with substance abuse;

•To raise funds that benefit treatment programs, services and supports specific to this population

As part of their fundraising efforts, Josh's Hope Foundation has held annual walks, the Walk With Purpose for Josh's Hope. I walked the second one in 2010. The walks and other events have raised approximately $35,000, no small change for a grassroots organization without paid staff. Two grants have been funded, to Club Nova in Carrboro and to Carolina Outreach in Durham, to provide programming and transitional services for young adults with mental illness.

Although the walk last year was not held because of the anticipated (but postponed) trials, the Bailey's have high hopes for the organization and what it can accomplish. Julie says, Steve and I - as well as our board - continue to dream big for JHF. We eventually want to see a program in our community that does a good job at engaging the 18 to 26 year old transitioning population with mental health conditions or dual diagnoses by providing training - a trade school type of program - which will give these kids real skills so they can find employment - and some options for housing support, as well as day treatment to support their mental health needs. On top of that we continue to work with parents of kids in this population so they will understand all they need to do to support and prepare the young adults for independent living. I know for us, when Josh turned 18, we had no clue what to do. We did not know how instantaneously the system of services changes on the 18th birthday so we weren't proactive for Josh. But we learned from our mistakes and were definitely proactive for our other two boys. Unfortunately, there's just not a lot of choices out there which means fewer options to really help this population. We want JHF to work with community stakeholders and to create more options, as well as motivate parents to be proactive before a kid's 18th birthday so they aren't caught off-guard with the changes in services.

What can you do to help? Donations of money are always appreciated and will be used to fund programs that can work with these young adults. You can also create job opportunities by hiring young mentally ill adults to work at your business. At Just Right Academy, our cleaning is done by people in this population. Another way to help is to become a COMPEER, a volunteer with Mental Health America of the Triangle and give the gift of friendship to a young adult with serious mental illness. If you visit the organization's website at www.joshshopefoundation.org, there are several opportunities to help and some don't even require the direct outlay of a financial contribution.

I asked Julie if JHF had helped ease the pain of Josh's death. She answered, some days it helps tremendously, knowing that something we're doing will make a difference in the life of a transitioning young adult and their family members. Those days come when I get a phone call or email from a parent whose child is in this population and they reconnect to tell me that something we suggested helped their son or daughter. It gives me hope that we really can change the future for these kids. But then there are days when nothing helps me and I succumb to the emotions over having lost Josh. I miss him and the reality of that loss is sometimes emotionally overwhelming.

Six young adults murdered Josh and there were three accomplices charged as accessories. The horror of what happened hasn't yet played out in the courtroom but the Baileys anticipate trials to begin in March. Nothing will make sense of Josh's death. There IS no meaning in this tragedy and there is no real justice to be had here. But there is grace and for that, I'm grateful. When my child with mental illness reaches 18, I hope there will be programs available for her. If there are, Steve and Julie will be among those to thank.