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Meet Your Family Support Team

Kate Beaver, MSW, CSW-Family Support Counselor

Because her daughter has Prader-Willi syndrome, Kate had first-hand knowledge of the challenges families encounter with the syndrome and had valuable personal experience in how to access services and support for her family prior to joining the PWSA (USA) staff. As a Crisis Intervention and Family Support Counselor, Kate’s job is to promote a higher quality of life for individuals with PWS by providing much-needed education to anyone seeking information about PWS, including family members, professional providers, law enforcement representatives, and so forth. Kate also helps evaluate and individual’s environment (home, work, school, etc.) to help families arrive at solutions that improve the quality of life for the individual with PWS and those supporting him or her.

Kate’s favorite part of her job is helping everyone achieve his or her best life. Kate loves hot air balloons, both watching them sail and riding in them.

 

Mary S. Burr DNP, CPNP-Medical Coordinator

Mary Burr has been a pediatric nurse for 36 years and a pediatric nurse practitioner for 16 years. She also holds a Doctor of Nursing Practice degree. A resident of the Baltimore, Maryland area, Mary has spent her career caring for children and families affected by chronic endocrine and musculoskeletal diseases. She has developed an affinity for care coordination of complex medical problems and the multidisciplinary approach to care delivery. In May 2016, Mary joined the Kennedy Krieger Institute, a pediatric rehabilitation hospital in Baltimore. While at Kennedy, Krieger learned the importance, and challenges, of integrating multiple medical, educational, and social services into care provided to families and children with complex medical needs. With her extensive experience in the management of care for children with endocrine disorders (which includes Prader-Willi syndrome) and her general experience in the pediatric rehabilitation setting, Mary is well-prepared to serve the PWS community as PWSA (USA)’s Medical Coordinator.

Mary is married with two adult children and two grandchildren. She is a frequent volunteer at her church and in her community. She enjoys gardening, floral design cooking, and boating, and golf.

 

Lori Moline-New Parent Support Specialist

Lori started at PWSA (USA) in early 2015, with a goal to revamp and revitalize the Parent Mentor and New Parent Support programs.  She is the mother of eight children (the youngest of which is 16 and has PWS by UPD).  Lori has a background in long-term care and she had planned a career as an art therapist (that is, until she realized being a mom was probably her true calling!). She was introduced to PWSA (USA) when her daughter Sophie was an infant and when she was connected to Carolyn Loker as her Parent Mentor. It has been a desire of Lori’s to give back to new families the support and encouragement she received from her connection with PWSA (USA) and the PWS community. Her position as a New Parent Support Specialist certainly affords her that ability!

Lori’s duties include speaking with parents of newly diagnosed infants and children, providing them with support and materials, and administrating the age-specific Facebook support groups.  She also enjoys working with families from outside the U.S. who contact PWSA (USA) assisting them with resources and materials in their own countries and languages. Lori also works closely with Diane Seely to provide support and resources for our ever-growing team of volunteer Parent Mentors.

In her spare time, Lori enjoys creating jewelry and other works of art, volunteering for the Red Cross, and loving on her beautiful grandchildren.

 

Diane Seely-New Parent Support Coordinator

Diane is a mother of five children. Her youngest child, Reagan, was diagnosed with Prader-Willi syndrome during infancy. Her four older children are: Justin (32); Kristin (29); Caitlin (26); and, Alisyn (25), all of whom all reside in Ohio.

Diane has been involved with PWSA (USA) for many years, first as a Parent Mentor and now as a New Parent Support Coordinator (since 2015). Diane is the first contact for families whose children have just been diagnosed with PWS.

“The need is great,” says Seely. “The best thing about our program is the sense of gratification from helping others…It’s therapeutic on both sides, for the parent and the parent mentor.” Diane adds that families find the Parent Mentoring Program to be a lifeline during a difficult time.

Diane spends her free time with her family and her labradoodle Goldie. She enjoys reading, and camping. Her goal is to take their RV to as many states as possible!

 

Stacy Ward, M.S.- Family Support Counselor

Stacy lives in Troy, NY with her husband, Jeff, her sons, Jeffrey (19) and Collin (15), and the love of her life, Freddy the Pitbull. She has been with PWSA since 2016. Stacy came to PWSA (USA) with 12 years of experience working with Prader-Willi syndrome and has worked with individuals and families living with several other disabilities in her previous role as a Professional Provider in New York. In addition, Stacy has a personal connection to the world of special needs as she has family members with intellectual disabilities. She holds a Master’s Degree in Applied Behavior Analysis that serves her well in her position with PWSA (USA).

Stacy has two primary duties;she assists with PWSA (USA)’s public policy advocacy efforts, and she works with families to both support and advocate for people with PWS. If you’ve ever had to call PWSA (USA) for assistance with a concern, there is a chance Stacy was the counselor who helped you. Stacy’s favorite part of her job is working with families affected by PWS and providers.

When not working, Stacy spends her time volunteering with several local youth sports organizations, kickboxing and watching her children play sports.

 

Please click here to donate to our Family Support campaign

 

 

 

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About the Author : Devon Young


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