cleftdvocate founder Debbie Oliver was presented with the 2005 ACPA/CPF Parent-Patient Leadership Award at the annual ACPA luncheon (in 2005 held in Myrtle Beach, SC). For more information on the award and a list of past winners, click here.
The following is the recipient's acceptance speech, presented to the ACPA membership and officers.
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Thank you, Dr. Reisberg. Thank you Nancy, Dr. Seaver and the committee.
It is an honor to address this prestigious group today. Thank you for inviting me...
I can’t tell you how excited I am about receiving the Leadership award. I’m sure each and every one of you would agree - it’s always nice to be recognized for our hard work.
But more than that, this year the Leadership award really recognizes the hard work of so many individuals and families, the members of our Pathfinder Outreach Network throughout this country and beyond.
I would like to accept this award on behalf of:
Joyce Bentz of Huntington, Indiana. Her son Ben sees the team at Chicago’s Shriner’s Hospital. Mary O’Gara, Kathy Kapp-Simon and the team have seen first-hand what one mom on a mission can do. Joyce is cleftAdvocate’s early intervention specialist and serves on our action committee. She is familiar with the ins and outs of the system and routinely assists parents on an individual basis and on our listserv at the Family-to-Family Connection, which is hosted by the Genetic Alliance. Not only does Joyce help parents navigate the EI system, she has also gone out into the community to educate nursing students about clefts in general, feeding methods and especially about delivery room etiquette, stressing to these future professionals that a smile and congratulations are well in order, while a gasp, and an *oh, my God* are not.
I would like to accept this award on behalf of:
Milli Davis of Raleigh, North Carolina. Milli’s son Rowan is now three years old, has had both his lip and palate repaired and was recently released from speech therapy services. But instead of saying thanks for your support and being on her way, this former labor and delivery nurse has spear-headed the Pathfinder movement in the Triangle area and has written a fabulous article, in conjunction with team member and Speech/Language Pathologist Kerry Callahan, about feeding options and feeding techniques for infants born with cleft palates. The reprint is used throughout the country by our Pathfinders, lactation consultants and various teams. Milli and her husband John will be donating their services to assist with childcare on Saturday so our local network families can attend the CPF Connections conference...I hope many of you here will attend, as well.
I would like to accept this award on behalf of:
Cathie and Don Sears of Columbia, South Carolina. Cathie and Don are the founders of Apert International. Their daughter, nicknamed Teeter, was born with the syndrome and, like many other families, this was a call to action. The Sears family maintains the most active family support listserv in the world specifically for Aperts, and they host an annual social gathering for families here in Myrtle Beach each summer. Some of you will have the chance to meet Cathie and her family as they are in town to attend the Connections Conference, as well. We are proud to call Apert International a Pathfinder Partner Organization.
I would like to accept this award on behalf of:
Missy Fry of Springdale, Pennsylvania. Dr. Losee, and team Coordinator Matt Ford – are you here this afternoon? A huge thanks to the both of you and the team. Missy was recently given the opportunity to meet with Dr. Losee and members of the team outside of the clinic setting to discuss the Pathfinder program and how Missy and her husband could lead the way in family outreach services in their area. Missy is now looking forward to her new volunteer roll with the Pittsburgh team, networking families, and providing valuable resources to those navigating the various healthcare and educational systems in her area.
I would like to accept this award on behalf of:
Catie Myers of Hollister, Missouri. I am particularly proud of Catie and her launch into the outreach arena. When Catie heard that funding could be cut for early intervention services in her state (and I know many states are struggling with this now), she didn’t sit idly by and simply worry about it...she did something about it. Catie took her son Chuck to the state’s capital in Jefferson City and was one of seven parents chosen to address legislators at the March hearing. She and Chuck even made it on TV, during the 5:00 news broadcast.
I would like to accept this award on behalf of:
Diana Sweeney of Philadelphia, Pennsylvania. Diana’s son Dan was born with a craniofacial condition. He’s an adult now, but Diana works with the team at CHOP as a parent liaison and so much more. In addition, her commitment to families through her volunteer work with the Children’s Craniofacial Association is unsurpassed. Diana really raises the bar when it comes to family outreach. We are so pleased to call CCA one of our Pathfinder Partner Organizations, as well.
Of course, these are only a few examples...I’m really accepting this award today for hundreds and thousands more individuals, some well-known to us and some not so well-known. They’ve offered a hand in friendship, useful resources, and insight into this incredible journey we are on together. They’ve offered a shoulder to lean on and in some cases, a shoulder to cry on.
When I launched the cleftAdvocate website three years ago, it was really because I wanted to help Southern Nevada families fight a particular managed care company. I posted denials letters, appeal letters and tips on how to make a presentation at a grievance committee hearing.
But within ten days, I was receiving e-mail and telephone calls from around the country...from parents, from adults, from organizations...it was then I realized that I’d hit on something pretty big.
Through a set of very unfortunate circumstances and a horrendous insurance battle for my daughter and my family, now came this incredible resource to help others, a website built from the heart, and a parent organization quickly taking on a life of its own. The cleftAdvocate website now has nearly 300 pages, with Featured Family stories, an incredible photo gallery with over 220 smiling faces and growing, more than 50 state and international pages noting resources like cleft/craniofacial teams, healthcare and insurance resources, education and early intervention resources, and the most important resource of all...our Pathfinder contacts.
In 2002, Betsy Wilson of Let’s Face It and Rickie Gill of AboutFace USA saw something in me and something in the cleftAdvocate organization that I did not yet fully understand. As Dr. Seaver, Amy Mackin and several of us from national and local organizations sat around the table for dinner one night in Seattle, we were asked to introduce ourselves and tell the small group about our strengths...what would each one of us bring to the table for this coalition of support organizations.
As my turn to speak approached, I just couldn’t think straight. I had a lump in my throat (much as I do today) and I was panicked, as I couldn’t pinpoint my strength. It wasn’t that I could build a website. It wasn’t that I could lay out a brochure. It wasn’t that I had won an insurance battle. So what was it?
I said my name, and then I paused. “Since I’m pretty new to this compared to the rest of you,” I said, “I’m not quite sure what my strength is.”
Then Betsy chimed in. “It’s networking,” she said, in her straightforward fashion. “Your strength is networking.”
I was stunned. “Okay, then. My strength is networking,” I said, not fully believing it, of course. I took a deep breath and said, “Then I guess I’ll go with that!”
Betsy Wilson, where are you today? Betsy, thank you for so very much! Thank you for your tireless commitment to the cause and for your endless and ongoing contributions to our community as a whole.
Rickie Gill could not be with us today, but of course she will be in Las Vegas in July for the North American Craniofacial Family Conference. We would like to invite you and your families to join us for a few days of very meaningful, powerful interaction and workshops, where our special guests will be Dr. Daniel J. Wattendorf from the Human Genome Project, David Roche and Barbara Kammerer Quayle...I’m sure those are familiar names to most of you here. More information about our guest speakers and the various workshops is available on our websites at www.cleftadvocate.org and www.aboutfaceusa.org.
But back to the point I was trying to make, it took someone else to help me recognize my own strengths. And now I will ask each and every one of you to go back to your communities, to your hospitals and teams and take a hard look and recognize the strengths in the parents you work with and the families you serve.
I believe it’s time to think of parents and families as community builders and not just as service recipients. And I hope you do, too.
While the craniofacial community may be small by comparison to other health issue communities like heart disease or cancer or diabetes, we are nonetheless a community.
Don’t underestimate parents and individuals with facial differences – what they have learned in their lives can be put to meaningful use. Our Pathfinders are ready to listen to parents and to those with facial differences, direct them to local/regional resources, offer guidance, distribute materials to birthing hospitals, ultrasound labs, pediatrician’s offices, as well as to schools of medicine and dentistry, exposing nursing and dental students to our world and how to best serve our families.
These are our Pathfinders...the been-there, done-that network of families and individuals. I’m asking you to take advantage of the tremendous human resource you have in your own backyard. We’re here to help – to be proactive. And let me be very clear...we are not here to compete with the wonderful services you provide as a team. We are here to enhance those services and to bridge any gaps that may exist. I know for a fact that you put in many hours, and you do so willingly, because this is your passion and your calling. But I’m sure you’d agree that there are only so many hours in a day.
So when a new mom wonders on Saturday night at 9PM if having milk come through her daughter’s nose is normal...Pathfinders will be there.
And when a dad sits down on Friday night with his wife, and they try to decipher all the information given to them at the team meeting earlier that day...Pathfinders will be there.
When an adult finds she needs secondary surgery or treatment, and the insurance company or HMO is denying coverage...Pathfinders will be there.
And when a couple comes home from the ultrasound lab, where their hopes and dreams have been shattered, but no information on their baby’s condition was provided to them...Pathfinders will be there.
I’d like to take just a few minutes more to thank some very special people...
Dr. Libby Wilson
Dr. Janet Salomonson
Virginia Reeves
These women really set the stage for all of this with their straight-forward approach to family-centered care. I’m not sure when that label came to be the popular buzz-phrase, but I can tell you that Drs. Wilson and Salomonson were practicing exactly that when we came in contact with them just a little over 18 years ago.
Dr. Wilson, Dr. Salomonson...thank you for treating me with respect. Thank you for lighting the fire. Thank you for your support when no families showed up in 1987 for my holiday potluck for clinic families.
Another quick thank you to the team in Las Vegas, especially Dr. John Menezes and Dr. Jeff Moxley. After moving to the Las Vegas valley from Southern California, I wasn’t sure I would find another team of professionals I could call my family...but I have. Las Vegas is the birthplace of the Pathfinder program and I thank you for your continued support, locally of course and for our national outreach efforts, as well.
And to my own family...my incredible family...thank you for your patience and for the sacrifices you have made as we work so diligently to help others. From the oldest to the youngest child, to my incredible husband...from the bottom of my heart...thank you.
What started out 18 years ago as my ability to talk anyone’s ear off has now come full circle. When your commitment to family, your priorities as a parent, and your passion for doing what you love all come together, the mission becomes crystal clear and you fully understand for what purpose you are here on this earth.
Making a world of difference in the world of facial differences...
That’s the Pathfinder program, cleftAdvocate and our entire organization...about you, about me, about the families we serve today and those we will serve tomorrow.
Thank you.
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This cleftAdvocate page was last updated March 25, 2014
2005 ACPA/CPF Parent-Patient Leadership Award
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