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AGENDA

8:15 - 9:00 AM 

REGISTRATION AND CONTINENTAL BREAKFAST

9:00 - 9:30 AM

WELCOMING REMARKS AND INTRODUCTIONS

9:30 - 10:30 AM

OPENING SESSION:

KIDS COUNT (Jodi O'Donnell-Ames, Dr. Terry

Heiman-Patterson, and Mackenzie Anderson)

10:30 - 10:45 AM 

BREAK

10:45 - 11:15 AM

BREAKOUT SESSIONS:

SUPPORTING CHILD CAREGIVERS

SESSION A: How Communities Can Support Children (Ryan Matthews and Dr. Michael Palmer)

SESSION B: Facing ALS as a Family (Shannon Sullivan and Sara Feldman)

SESSION C: Children and Bullying (Kidsbridge)

11:15 - 11:45 AM

BREAKOUT SESSION PANEL DISCUSSION

12:00 - 1:00 PM

LUNCH AND UNDERSTANDING CHILDREN'S GRIEF (Jesse Bassett)

1:00 - 1:30 PM

CHILD CAREGIVERS (Connie Siskowski)

1:30 - 2:00 PM

PARENTS PANEL

Parents share the challenges their children face having a loved one with ALS

2:00 - 2:15 PM 

BREAK

2:15 - 3:15 PM

BREAKOUT SESSIONS:

HELPING CHILDREN COPE

SESSION A: Music as Emotional Language (Jesse Neuman)

SESSION B: The Healing Power of Art (Jane Zamost)

SESSION C: The Many Benefits of Yoga and Meditation (Tina LeMar)

3:15 - 4:15 PM

CLOSING SESSION:

CHILDREN'S PANEL

Children caregivers share their experiences and challenges

4:15 - 4:30 PM

MUSIC AND CLOSING REMARKS

Jane Zamost

Parent Panel Speakers

Jodi

O'Donnell-Ames

Dr. Michael

Palmer

Connie

Siskowski

Shannon

Sullivan

Ryan

Matthews

Jesse

Neuman

Sara

Feldman

Dr. Terry
Heiman-Patterson

Mackenzie

Anderson

Jesse

Bassett

Kidsbridge

Tina
LeMar

Mackenzie Anderson

 

Mackenzie Anderson is a dedicated ALS Advocate. In August 2014, before entering her junior year of high school, her mom was diagnosed with ALS, along with FTD. Only a teenager at the time, she was heartbroken and quickly became depressed.  As a child caregiver, Mackenzie needed to help bathe, toilet and assist her mom in all daily life activities. She knew she had to do something more to help her mom, so she ended up raising over $60,000 for the ALS Association. However, she found that there was a lack of resources for children who had a parent with ALS. After looking online, Mackenzie found Hope Loves Company and has been connected ever since. Not only has she set up fundraisers for HLC, but more importantly, she has been an advocate for children whose families are affected by this disease. Mackenzie has shared her story at the International ALS Alliance Meeting in Orlando, at a Minor League Baseball game in New Jersey, and with the MND Association in Iceland. She is now currently a rising senior at the Pennsylvania State University, majoring in Corporate Innovation and Entrepreneurship. Once she graduates, Mackenzie hopes to support Health Care and Life Sciences companies through consulting at Deloitte. Her ultimate career goal is to facilitate cutting edge research in healthcare, including robotics and AI, which could eventually cure neurodegenerative diseases. As a non-scientist, my role would be on the investment side, likely in a role with a venture capital firm. She is especially interested in supporting female entrepreneurs to solve these critical healthcare issues, as well as helping patients who desperately need assistance

Jesse Bassett, MDiv.

 

Jesse Bassett is the Director of Education for Good Grief, a nonprofit organization based out of Morristown and Princeton, New Jersey. Good Grief’s mission is to build resilience in children, strengthen families, and empower communities to grow from loss and adversity. Jesse works closely with professionals, parents, volunteers, and caring members of the community to train, guide, and support through grief and loss. Jesse holds BA in philosophy and a Master of Divinity from Princeton Seminary with a focus on philosophy and ethics.

Sara Feldman, PT, DPT, ATP

 

Sara Feldman, PT, DPT, ATP, is the Physical Therapist and Assistive Technology Professional at the MDA/ALS Center of Hope at Temple University Lewis Katz School of Medicine. She has been the PT at the center since 1994 and in addition to clinical care she is involved in clinical trials, education, and the use of assistive technology. Sara is the Clinical Liaison for the ALS Hope Foundation in Philadelphia; she is on the Board of Directors of the International Alliance of ALS/MND Associations and co-chairs the Allied Professionals Forum; she is a co-founder of the Northeast ALS Consortium (NEALS) Physical Therapy Committee and served as the Clinical Evaluator representative on the NEALS Executive Committee. She looks forward to the day there is a cure for ALS, but until that time, will continue to be an avid advocate for better care.

 

Dr. Terry Heiman-Patterson

Dr. Heiman-Patterson is Professor of Neurology and Director of the MDA ALS Center of Hope at Temple University Lewis Katz School of Medicine. Her career has been dedicated to clinical care and research in ALS. She does both basic and clinical research in ALS. Under her direction, the Center of Hope has conducted clinical trials testing more than 25 different experimental treatments, while basic research is conducted using a mouse model to study genes that can modify the severity of the disease as well as examine whether novel treatments can extend lifespan. Her clinical research has been directed at extending survival and improving the quality of life with an emphasis on respiratory care and the application of technology to people living with ALS (PALS). This work includes developing BCI (Brain computer interface) for home based use by PALS in order to allow an increased independence. She is on the Executive Board of Northeast ALS Consortium and a previous Co-Chair, is a member of the ALS RG, an international study group, and as President of the ALS Hope Foundation she is a member of the International Alliance of MND. She has published over 120 papers, abstracts, and chapters on ALS and related motor neuron diseases along with more than 60 additional papers on other areas of muscle and nerve disease. As an extension of her commitment to ALS she founded the ALS Hope Foundation a non-profit organization dedicated to making a difference to people living with ALS.

Tina LeMar

 

Tina LeMar has been practicing and teaching yoga since 1993. Her credentials include two Master's degrees; an MA in Education & Curriculum and an MBA in Business Administration, as well as extensive graduate level classes in Family and Systems Psychology. Tina’s formal yoga trainings are in the popular Hatha, Ashtanga and Iyengar yoga styles and she is a certified yoga teacher trainer of the International Yoga Alliance. Tina has owned and operated a successful yoga and wellness business along with yoga studios in the Philadelphia metropolitan area and in the neighboring state of New Jersey for over fifteen years and was the founder and editor of the digital magazine, “Yoga Bean Magazine” for over six years.
 

Tina founded and currently runs a successful 501(c)(3) nonprofit organization, “Sheltered Yoga”, which brings mental and behavioral health and wellness through psychosocial & social emotional activities, life skills, yoga and mindfulness education. The nonprofit serves individuals and
communities by using a specialized evidence-based, trauma informed curriculum that fosters strong self-awareness, self-regulation, confidence, tolerance and self empowerment. Sheltered Yoga’s program is taught in Pennsylvania, New Jersey, Delaware, New York, and continually expanding. The nonprofit has been recognized as a very effective and innovative approach to rebuilding self-esteem, self-worth, self-regulation, self-awareness and compassion among the communities and individuals it serves. Tina wrote an extensive curriculum for Sheltered Yoga that is being used in all their programming. This curriculum helps actualize the missions outcomes. All Sheltered Yoga
teachers are trained in the curriculum.

 

Tina’s advanced degree and thesis in teaching focused on the physiological and neurological changes that occur in the brain during a yoga and meditation practice. As a direct result of her work, she is considered a pioneer in the field of “Yoga Therapy and Meditation.” She has ongoing clinical research employing the benefits of yoga and meditation to mitigate the clinical characteristics of Attention Deficit / Hyperactivity Disorder, Addictions, Autism, Pain Management, and Mental and Physical Trauma. She is available to speak on such unique topics as: “Yoga and Stress Reduction,” “Yoga and Health,” “The Psychology Behind Yoga Postures,” “Yoga as a treatment for Anxiety and
Panic Disorder,” “Yoga for Individuals Suffering from Trauma/PTSD,” “Chronic Pain and Addiction Rehabilitation through Yoga,” and “The Benefits of Yoga for Autistic Children,” and many other current topics of yoga, meditation, mindfulness, trauma, and cultural and gender differences in yoga.

 

Ryan Matthews

Ryan Matthews serves as the Director of Community Programs with Nutmeg Big Brothers Big Sisters and the Executive Director of the Susie Foundation. At Nutmeg, Ryan is charged with leading Connecticut’s largest one-to-one, community-based youth mentoring program, which serves well over 450 children across Nutmeg’s 132 town service area. During Ryan’s tenure as program director, Nutmeg has grown year over year to serve an increasing number of children across Connecticut and the agency has been nationally recognized by Big Brothers Big Sisters of America for outstanding service delivery. Additionally, Ryan has tackled statewide youth advocacy and capacity building efforts, having been appointed by Governor Malloy to the Governor’s Youth and Urban Violence Commission and the Connecticut State Legislature’s Juvenile Justice Policy Oversight Committee’s Diversion Workgroup, as well as serving as the chairman of the Greater Hartford Mentoring Collaborative and steering committee member of the Southeastern Connecticut Mentoring Collaborative. In addition to his work at Nutmeg Big Brothers Big Sisters, Ryan concurrently serves as the Executive Director of The Susie Foundation, an organization which he founded following his mother’s death to support families struggling with Amyotrophic Lateral Sclerosis. During his tenure as Executive Director, The Susie Foundation has raised over $250,000 to support local families struggling with the financial burdens levied by an ALS diagnosis and has expanded to serve the entirety of southern New England.

Ryan was named to the Hartford Business Journal’s 40 under 40 list in 2016 and was inducted into the Woodland High School Hall of Fame in 2017. He has also been named a Hometown Hero by the Hartford Courant and a Myra Kraft Community MVP by the New England Patriots. Ryan graduated Magna Cum Laude from the University of Connecticut in 2009 with a BA in History and Political and received his MPA in Nonprofit Management from the University of Connecticut in 2016.

Jesse Neuman

 

Jesse Neuman is a trumpeter, composer, and the founder/director of www.MusicworksNYC.org, a non-profit organization which presents arts programming to students in school settings, through scholarship private lessons, with children with developmental delays and physical disabilities, and in concerts for senior citizens suffering from dementia.  He sings along with preschoolers at Rider University, presents Diversity Education through Music to elementary schoolers, teaches Women’s Music History to middle schoolers, runs high school Jazz ensembles, teaches Latin American Music to undergraduates, and works with the Alzheimers Poetry Project for senior citizens.  Mr. Neuman has taught abroad in Ecuador, Guatemala, Cuba, and Cambodia, has performed at Lincoln Center, the Brooklyn Academy of Music, and on NPR, and is the artist in residence at Princeton Academy of the Sacred Heart. He recently completed his 5th HLC camp, and is proud to play a small part in such an amazing organization.

 

Jodi O'Donnell-Ames

Jodi O'Donnell-Ames is a certified teacher, writer, member of Union Fire Co. and Rescue Squad and tireless advocate for Lou Gehrig's disease, or ALS (Amyotrophic Lateral Sclerosis). She is also the founder and Community Outreach Director of Hope Loves Company, a non-profit organization committed to providing educational and emotional support to children and young adults who have had or have a loved one battling ALS in their lives.  She lives with her husband Benton in Titusville, NJ. Their children, all young adults, have lost a parent to ALS before the age of 11.  Jodi is the author of two books, The Stars that Shine and Someone I Love has ALS. She was chosen as People Magazine's "Hero Among Us” and is the recipient of many awards including the Russ Berrie Making a Difference Award, the AFP (Association of Fundraising Professionals) Founder’s Award,  the TIAA Difference Maker Award, the New Jersey Governors Jefferson Award, the TCNJ Alumni Humanitarian Award and the Princeton/Mercer Chamber of Commerce Women in Achievement Award. In addition, she was invited to give a Tedx talk on Leading a Life with Purpose.

Dr. Michael Palmer

 

Dr. Palmer is the director of Healthmark Counseling, LLC; a private outpatient mental health practice in Cinnaminson, New Jersey. Over the past 20 years he has been involved in the treatment of offenders in domestic abuse/violence, and workplace and school violence, as well as treating adolescent and adult clients for a range of mental health issues. Dr. Palmer is a lecturer, and consultant and has designed

school-based anger management and violence prevention and intervention programs, as well as the H.E.A.R. (Helping End Abusive Relationships) batterer intervention, anger management, and responsible fatherhood parenting programs. Dr. Palmer is a member of the Burlington County Domestic Violence Collaborative and has participated in the State Panel for Batterer Intervention and Domestic Violence
Programs. He is currently a member of the New Jersey Department of Children and Families strategic planning committee to prevent domestic violence. Dr. Palmer also participated as a member of an expert panel at the Department of Children and Families and the New Jersey Task Force on Child Abuse and Neglect Biannual Conference “Co-occurrence of Domestic Violence and Child Abuse/Neglect, and the
Impact on Children.” He hopes to contribute to the growth and expansion of HLC and its mission.

Connie Siskowski, RN, PhD

 

Connie Siskowski, RN, PhD was educated at Johns Hopkins, Montclair State and New York University, and she obtained her PhD in 2004 from Lynn University. Connie never expected her doctoral research to uncover the high prevalence of family health situations and concomitant caregiving with detrimental academic effects upon children in Palm Beach County. Her broad background in healthcare and dedication to diminishing caregiver struggles led to the 1998 establishment of a nonprofit organization which has transformed itself to become what is now the American Association for Caregiving Youth (AACY), headquartered in Boca Raton, FL. AACY includes the Caregiving Youth Project of Palm Beach County, the first US program to support the hidden population of child caregivers; a growing AACY Affiliate Network of collaborating partnerships; and the Caregiving Youth Institute that serves to C.A.R.E. – Connect, Advocate, Research and Educate. Membership in its Caregiving Youth Research Collaborative, in partnership with the University of NC in Chapel Hill, includes professionals from nine universities across the US. The needs of caregiving youth are beyond the purview of any one system so AACY integrates healthcare, education and the community (body, mind and spirit) to provide a strong foundation for the youth and their families.

 

Connie has contributed to multiple journal articles about youth caregivers as well as a book, I’m a Teen Caregiver. Now What? Included among multiple awards she has received are the lifetime Ashoka Fellowship, Purpose Prize, Distinguished Alumna Award from Johns Hopkins University, Top Ten CNN Hero for 2012, the Listen, Learn and Care Award from the Office Depot Foundation and a star on Boca Raton’s Walk of Recognition.

 

Jane Zamost

I am continually amazed at the restorative impact that art holds for both its maker and audience. The heart slows, the mind focuses, the rhythm of the room transforms. I am fortunate to work in two worlds -- one as a painter/mixed media artist and the second as a healing art instructor guiding patients in the creative process. The melding of my work comes to the surface in faces, nature, colors and movement with my ultimate desire of articulating hope. When art soothes... hope rises.
 

Jane Zamost is a painter and mixed media artist intrigued with the healing arts and its profound effect on the human spirit. She recently served as the Healing Arts Program Coordinator at Capital Health. Jane was a founder of LUX Gallery and in her former career, Senior Vice President at Projects In Knowledge. Jane graduated from Rutgers University, studied at Mason Gross School of the Arts and, in London, England, the Sir John Cass School of Art and the London Polytechnic.

Parent Panelists

 

Steven Asch

Father of two boys: Jaiden,15 and Justin, 12. Husband and caregiver of Tammy Asch who has been fighting ALS since January 4, 2014.