Amish Inherited Disease conference

Who Should Attend
Lodging
The conference is designed for clinicians and other health care workers,
educators, administrators and board members who serve the Anabaptist
(Amish and Mennonite) populations west of central Pennsylvania.
A discounted rate of $135/night is available at the Wallhouse Hotel, Walnut Creek, OH
(www.wallhousehotel.com) for Friday April 24 and Saturday April 25.
Call 330-852-6105/800-824-2013 to reserve a room. Be sure to mention the
“Windows of Hope” discount when making your reservation.
Childrens Hospital Medical Center of Akron is accredited by the Ohio State
Medical Association to provide continuing medical education for physicians.
Call Arie Troyer at 330-359-9888 if you prefer other lodging suggestions.
Childrens Hospital Medical Center of Akron designates this live educational
activity for a maximum of 6.75 AMA PRA Category 1 CreditsTM. Physicians
should only claim credit commensurate with the extent of their participation
in this activity.AMA PRA Category 1 credits are accepted by the Ohio Board
of Nursing for CEU. Nurses should only claim credit commensurate with the
extent of their participation in the activity.
The Pier at Lighthouse of Hope
10470 Winesburg Road
Dundee, Ohio
Ohio Department of Developmental Disabilities approval for Early Intervention
CEU’s is pending.
Registration
This conference is free. This conference is funded by a Medical Research
Foundation Alexander Fleming Dissemination Award.
Pre-registration is required. Registration deadline is April 15, 2015. Same-day
registration is not provided. Handouts, lunch and refreshments are included
with registration.
Special Accommodations
If you need special accommodations due to a disability, please notify
Arie Troyer at 330-359-9888 by April 15.
Planning Committee
Emma Baple, MBBS, MRCPCH, PhD
Andrew Crosby, PhD
Martha Horst, RN, MSN
Freda Miller
Kris Schmucker, MT(ASCP)
Arie Troyer, LPN
Olivia Wenger, MD
Katrina Wolford, CME Coordinator
Location/Directions
Saturday, April 25, 2015
8:45 a.m. - 5 p.m.
Note that Winesburg Road is also
county road 186. “The Pier” houses
Beacon Hill Community School.
The Pier/Beacon Hill Community School
10470 Winesburg Rd.
Mount Eaton, Ohio
From Akron/North: Follow 77-South to exit 104/30 West. Take 30 West to OH-241
exit toward Brewster/Mt. Eaton. Turn left onto Millersburg Road SW/OH-241. Follow
OH-241 8.5 miles into Mt Eaton. At the first Mt. Eaton red light/Red Tomato market,
turn right onto Main Street/US-250/OH-241. At the second Mt. Eaton red light, turn left
onto OH-241. Follow OH-241 0.3 miles to county road 186/Winesburg Road. Bear left
onto county road 186/Winesburg Road. Follow County Road 186/Winesburg Road 1.3
miles to The Pier. Enter the drive on the left.
From Walnut Creek/South: take Rt. 515 out of Walnut Creek (past Der Dutchman)
through Trail for 5 miles to Rt. 62. Turn right on Rt. 62 & follow that for 2 miles through
Winesburg to CR 186. Veer left onto CR 186 (by sign to Sojourner's Lodge). Follow CR
186 around a sharp left & it becomes Winesburg Rd. Stay on Winesburg Road for 3
miles. You will reach the Pier on your right. Look for a sign with a Lighthouse on it.
From Wooster/West: Follow OH-250 East into Mount Eaton. Turn right at the first
Mt. Eaton red light onto OH-241. Follow OH 241 south 0.3 miles to county road
186/Winesburg Road. Bear left onto county road 186/Winesburg Road. Follow
CR 186/Winesburg Road 1.3 miles to The Pier. Enter the drive on left.
Disclosure Statement
As a provider of the Ohio State Medical Association, it is the policy to require the
disclosure of the existence of any financial interest a planning committee member
and presenters have with either the commercial supporter(s) of this activity or the
manufacture(s) of any commercial product(s) discussed, and when necessary,
resolve any potential conflict. None of the planning committee members have a
financial conflict to disclose or resolve. The following presenters have the following
conflict to disclose:
Kenneth Zahka, MD: AIM Imaging
New Leaf Clinic for Special Children
PO Box 336
15988B East Chestnut Street
Mt. Eaton, OH 44659
Continuing Education
Practical Approaches to
Amish Inherited Disease
The conference is designed for clinicians and other health care workers,
educators, administrators and board members who serve the Anabaptist
(Amish and Mennonite) populations west of central Pennsylvania.
Continuing Education
Lodging
Call 330-852-6105/800-824-2013 to reserve a room. Be sure to mention the
“Windows of Hope” discount when making your reservation.
Childrens Hospital Medical Center of Akron is accredited by the Ohio State
Medical Association to provide continuing medical education for physicians.
Call Arie Troyer at 330-359-9888 if you prefer other lodging suggestions.
Childrens Hospital Medical Center of Akron designates this live educational
activity for a maximum of 6.75 AMA PRA Category 1 CreditsTM. Physicians
should only claim credit commensurate with the extent of their participation
in this activity.AMA PRA Category 1 credits are accepted by the Ohio Board
of Nursing for CEU. Nurses should only claim credit commensurate with the
extent of their participation in the activity.
The Pier at Lighthouse of Hope
10470 Winesburg Road
Dundee, Ohio
Ohio Department of Developmental Disabilities approval for Early Intervention
CEU’s is pending.
Registration
This conference is free. This conference is funded by a Medical Research
Foundation Alexander Fleming Dissemination Award.
Pre-registration is required. Registration deadline is April 15, 2015. Same-day
registration is not provided. Handouts, lunch and refreshments are included
with registration.
Special Accommodations
If you need special accommodations due to a disability, please notify
Arie Troyer at 330-359-9888 by April 15.
Planning Committee
Emma Baple, MBBS, MRCPCH, PhD
Andrew Crosby, PhD
Martha Horst, RN, MSN
Freda Miller
Kris Schmucker, MT(ASCP)
Arie Troyer, LPN
Olivia Wenger, MD
Katrina Wolford, CME Coordinator
Practical Approaches to
Amish Inherited Disease
A discounted rate of $135/night is available at the Wallhouse Hotel, Walnut Creek, OH
(www.wallhousehotel.com) for Friday April 24 and Saturday April 25.
Location/Directions
Saturday, April 25, 2015
8:45 a.m. - 5 p.m.
Note that Winesburg Road is also
county road 186. “The Pier” houses
Beacon Hill Community School.
The Pier/Beacon Hill Community School
10470 Winesburg Rd.
Mount Eaton, Ohio
From Akron/North: Follow 77-South to exit 104/30 West. Take 30 West to OH-241
exit toward Brewster/Mt. Eaton. Turn left onto Millersburg Road SW/OH-241. Follow
OH-241 8.5 miles into Mt Eaton. At the first Mt. Eaton red light/Red Tomato market,
turn right onto Main Street/US-250/OH-241. At the second Mt. Eaton red light, turn left
onto OH-241. Follow OH-241 0.3 miles to county road 186/Winesburg Road. Bear left
onto county road 186/Winesburg Road. Follow County Road 186/Winesburg Road 1.3
miles to The Pier. Enter the drive on the left.
From Walnut Creek/South: take Rt. 515 out of Walnut Creek (past Der Dutchman)
through Trail for 5 miles to Rt. 62. Turn right on Rt. 62 & follow that for 2 miles through
Winesburg to CR 186. Veer left onto CR 186 (by sign to Sojourner's Lodge). Follow CR
186 around a sharp left & it becomes Winesburg Rd. Stay on Winesburg Road for 3
miles. You will reach the Pier on your right. Look for a sign with a Lighthouse on it.
From Wooster/West: Follow OH-250 East into Mount Eaton. Turn right at the first
Mt. Eaton red light onto OH-241. Follow OH 241 south 0.3 miles to county road
186/Winesburg Road. Bear left onto county road 186/Winesburg Road. Follow
CR 186/Winesburg Road 1.3 miles to The Pier. Enter the drive on left.
Disclosure Statement
As a provider of the Ohio State Medical Association, it is the policy to require the
disclosure of the existence of any financial interest a planning committee member
and presenters have with either the commercial supporter(s) of this activity or the
manufacture(s) of any commercial product(s) discussed, and when necessary,
resolve any potential conflict. None of the planning committee members have a
financial conflict to disclose or resolve. The following presenters have the following
conflict to disclose:
Kenneth Zahka, MD: AIM Imaging
New Leaf Clinic for Special Children
PO Box 336
15988B East Chestnut Street
Mt. Eaton, OH 44659
Who Should Attend
The conference is designed for clinicians and other health care workers,
educators, administrators and board members who serve the Anabaptist
(Amish and Mennonite) populations west of central Pennsylvania.
Continuing Education
Lodging
Call 330-852-6105/800-824-2013 to reserve a room. Be sure to mention the
“Windows of Hope” discount when making your reservation.
Childrens Hospital Medical Center of Akron is accredited by the Ohio State
Medical Association to provide continuing medical education for physicians.
Call Arie Troyer at 330-359-9888 if you prefer other lodging suggestions.
Childrens Hospital Medical Center of Akron designates this live educational
activity for a maximum of 6.75 AMA PRA Category 1 CreditsTM. Physicians
should only claim credit commensurate with the extent of their participation
in this activity.AMA PRA Category 1 credits are accepted by the Ohio Board
of Nursing for CEU. Nurses should only claim credit commensurate with the
extent of their participation in the activity.
The Pier at Lighthouse of Hope
10470 Winesburg Road
Dundee, Ohio
Ohio Department of Developmental Disabilities approval for Early Intervention
CEU’s is pending.
Registration
This conference is free. This conference is funded by a Medical Research
Foundation Alexander Fleming Dissemination Award.
Pre-registration is required. Registration deadline is April 15, 2015. Same-day
registration is not provided. Handouts, lunch and refreshments are included
with registration.
Special Accommodations
If you need special accommodations due to a disability, please notify
Arie Troyer at 330-359-9888 by April 15.
Planning Committee
Emma Baple, MBBS, MRCPCH, PhD
Andrew Crosby, PhD
Martha Horst, RN, MSN
Freda Miller
Kris Schmucker, MT(ASCP)
Arie Troyer, LPN
Olivia Wenger, MD
Katrina Wolford, CME Coordinator
Practical Approaches to
Amish Inherited Disease
A discounted rate of $135/night is available at the Wallhouse Hotel, Walnut Creek, OH
(www.wallhousehotel.com) for Friday April 24 and Saturday April 25.
Location/Directions
Saturday, April 25, 2015
8:45 a.m. - 5 p.m.
Note that Winesburg Road is also
county road 186. “The Pier” houses
Beacon Hill Community School.
The Pier/Beacon Hill Community School
10470 Winesburg Rd.
Mount Eaton, Ohio
From Akron/North: Follow 77-South to exit 104/30 West. Take 30 West to OH-241
exit toward Brewster/Mt. Eaton. Turn left onto Millersburg Road SW/OH-241. Follow
OH-241 8.5 miles into Mt Eaton. At the first Mt. Eaton red light/Red Tomato market,
turn right onto Main Street/US-250/OH-241. At the second Mt. Eaton red light, turn left
onto OH-241. Follow OH-241 0.3 miles to county road 186/Winesburg Road. Bear left
onto county road 186/Winesburg Road. Follow County Road 186/Winesburg Road 1.3
miles to The Pier. Enter the drive on the left.
From Walnut Creek/South: take Rt. 515 out of Walnut Creek (past Der Dutchman)
through Trail for 5 miles to Rt. 62. Turn right on Rt. 62 & follow that for 2 miles through
Winesburg to CR 186. Veer left onto CR 186 (by sign to Sojourner's Lodge). Follow CR
186 around a sharp left & it becomes Winesburg Rd. Stay on Winesburg Road for 3
miles. You will reach the Pier on your right. Look for a sign with a Lighthouse on it.
From Wooster/West: Follow OH-250 East into Mount Eaton. Turn right at the first
Mt. Eaton red light onto OH-241. Follow OH 241 south 0.3 miles to county road
186/Winesburg Road. Bear left onto county road 186/Winesburg Road. Follow
CR 186/Winesburg Road 1.3 miles to The Pier. Enter the drive on left.
Disclosure Statement
As a provider of the Ohio State Medical Association, it is the policy to require the
disclosure of the existence of any financial interest a planning committee member
and presenters have with either the commercial supporter(s) of this activity or the
manufacture(s) of any commercial product(s) discussed, and when necessary,
resolve any potential conflict. None of the planning committee members have a
financial conflict to disclose or resolve. The following presenters have the following
conflict to disclose:
Kenneth Zahka, MD: AIM Imaging
New Leaf Clinic for Special Children
PO Box 336
15988B East Chestnut Street
Mt. Eaton, OH 44659
Who Should Attend
Registration Form
Conference Objectives
Neurodevelopmental Disorders
The Delayed, Fussy, or Seizing Baby: Diagnosis is Possible!
Panel members: Emma Baple, MBBS, MRCPCH, PhD,
Margaret McBride, MD, Kevin Strauss, MD,
Olivia Wenger, MD
Case Presenters: Tom Herr, MD, Brent Lehman, MD
• Recognize population-specific differential diagnoses for:
Hypotonia/Spasticity
Fussy infant
Failure to thrive
Developmental delay/intellectual disability
Epilepsy
Ataxia/Movement Disorders
Autism
• Describe how to investigate infants/children from the plain population
presenting with neurodevelopmental or neurodegenerative disorders
• Develop appreciation for multidisciplinary management strategies of
inherited neurodevelopmental disorders including:
Brittle hair syndrome
Cockayne syndrome
GM3 synthase deficiency
GM2 synthase deficiency
HERC2 related disorder (Blue Eye Delay syndrome)
KPTN related disorder (MASD syndrome)
MTPAP related spastic ataxia
Nephrocerebellar syndrome
SNIP1 related disorder (Symptomatic Epilepsy and Skull Dysplasia)
SAMHD1 Aicardi Goutieres syndrome
• Recognize inheritance patterns of common neurodevelopmental disorders
in the plain population
• Recognize the utility of early genetic testing in improving health care
outcomes and learn how to access this
Cartilage Hair Hypoplasia
Dennis Weiner, MD, Emma Baple, MBBS, MRCPCH, PhD, Kevin Strauss, MD
• Describe the typical orthopedic clinical issues of patients with CHH
• Identify typical radiologic features (orthopedic) of CHH
• Indicate the typical orthopedic problems of CHH that will likely require
surgical treatment
• Recognize the importance of preventative care in the CHH population
This conference is free thanks to the support of the Windows of Hope Genetics
Information Center/Alexander Fleming Dissemination Award. However, pre-registration
is required for attendance. Please complete and mail the form below to register.
Inherited Cardiac Conditions
Titus Dutcher, MD, Kenneth Zahka, MD
• Recognize the common inherited cardiac conditions in the community (hypertrophic
cardiomyopathy, long QT syndrome and propionic acidaemia) and formulate a
differential diagnosis and management plan
• Identify when it is appropriate to refer to cardiology
NAMETITLE
Hereditary Spastic Paraplegias
Nolan Byler, DO, Christos Proukakis, MBBS, FRCP, PhD
ORGANIZATION
• Recognize common causes of HSP in the plain population (GM2 synthase deficiency,
Troyer and Mast syndrome), differentiating clinical features, inheritance patterns, and
genetic counseling issues
• Develop skills in clinical management of HSP
Group discussion
Conference Agenda
Emma Baple, MBBS, MRCPCH, PhD, Olivia Wenger, MD
• Identify barriers to early diagnosis of inherited disease in Northeast Ohio’s plain people
• Develop strategies to improve the care of common inherited disorders in
our patient population
• Develop priorities for culturally appropriate, population based intervention
and preventative care within a medical home model
Faculty
Emma Baple, MBBS,
MRCPCH, PhD
Consultant Clinical Geneticist
University Hospital Southampton
Windows of Hope Project, Exeter
Margaret McBride, MD
Pediatric Neurologist
Akron Childrens Hospital
Akron, OH
Nolan Byler, DO
Family Practice
Mount Eaton, OH
Titus Dutcher, MD
East Holmes Family Practice
Walnut Creek, OH
ADDRESS
WORK PHONE
8:15 - 8:45 a.m.
Check-in
8:45 - 9:00 a.m.
Welcome
9:00 - 9:15 a.m.
Healthcare Delivery to Northeast Ohio’s Amish:
Historical Perspective
Olivia Wenger, MD
Brent Lehman, MD
Family Practice
Mount Eaton, OH
Elton Lehman, DO
Family Practice
Mount Eaton, OH
Kevin Strauss, MD
Pediatrician/Medical Director
Clinic for Special Children
Strasburg, PA
Olivia Wenger, MD
Pediatrician/Medical Director
New Leaf Clinic for Special
Children
Mount Eaton, OH
Dennis Weiner, MD
Pediatric Orthopedic Surgeon
Akron Childrens Hospital
Akron, OH
Kenneth Zahka, MD
Pediatric Cardiologist
Cleveland Clinic Childrens
Hospital
Cleveland, OH
Christos Proukakis, MBBS,
FRCP, PhD
Consultant Neurologist
University College
London, England
Elton Lehman, DO
Margaret McBride, MD, Kevin Strauss, MD, Olivia Wenger, MD
Case Presenters: Tom Herr, MD, Brent Lehman, MD 9:15 - 10:15 a.m.
10:15 - 10:30 a.m. 10:30 -11:15 a.m.
11:15 a.m. - 12:00 p.m. 12:00 - 1:00 p.m. Cartilage Hair Hypoplasia
1:00 - 1:45 p.m. Lunch
1:45 - 2:45 p.m.
Inherited Cardiac Conditions
Cases #1 and 2
Coffee Break
Case #3
Case #4
Dennis Weiner, MD, Emma Baple, MBBS, MRCPCH, PhD, Kevin Strauss, MD
Titus Dutcher, MD, Kenneth Zahka, MD
2:45 - 3:45 p.m. Hereditary Spastic Paraplegia
3:45 - 4:00 p.m. High Tea
4:00 - 5:00 p.m.
Nolan Byler, MD, Christos Proukakis, MBBS, FRCP, PhD
Group discussion
CELL PHONE
EMAIL ADDRESS
9:15 a.m. - 12:00 p.m. Neurodevelopmental Disorders
The Delayed, Fussy or Seizing Baby: Diagnosis is Possible!
Panel members: Emma Baple, MBBS, MRCPCH, PhD,
Thomas Herr, MD
Family Practice
Coon Valley, WI
CITYSTATEZIP
Emma Baple, MBBS, MRCPCH, PhD, Olivia Wenger, MD, Kevin Strauss, MD
Please check one:
o MD/DO
o APN
o RN/LPN
o ST/OT/PT
o Midwife
o Other ___________________________________________________________
For more information, call Arie Troyer at 330-359-9888
Mail form to:
Arie Troyer
New Leaf Clinic for Special Children
PO Box 336
15988B East Chestnut Street
Mt. Eaton, OH 44659
Registration Form
Conference Objectives
Neurodevelopmental Disorders
The Delayed, Fussy, or Seizing Baby: Diagnosis is Possible!
Panel members: Emma Baple, MBBS, MRCPCH, PhD,
Margaret McBride, MD, Kevin Strauss, MD,
Olivia Wenger, MD
Case Presenters: Tom Herr, MD, Brent Lehman, MD
• Recognize population-specific differential diagnoses for:
Hypotonia/Spasticity
Fussy infant
Failure to thrive
Developmental delay/intellectual disability
Epilepsy
Ataxia/Movement Disorders
Autism
• Describe how to investigate infants/children from the plain population
presenting with neurodevelopmental or neurodegenerative disorders
• Develop appreciation for multidisciplinary management strategies of
inherited neurodevelopmental disorders including:
Brittle hair syndrome
Cockayne syndrome
GM3 synthase deficiency
GM2 synthase deficiency
HERC2 related disorder (Blue Eye Delay syndrome)
KPTN related disorder (MASD syndrome)
MTPAP related spastic ataxia
Nephrocerebellar syndrome
SNIP1 related disorder (Symptomatic Epilepsy and Skull Dysplasia)
SAMHD1 Aicardi Goutieres syndrome
• Recognize inheritance patterns of common neurodevelopmental disorders
in the plain population
• Recognize the utility of early genetic testing in improving health care
outcomes and learn how to access this
Cartilage Hair Hypoplasia
Dennis Weiner, MD, Emma Baple, MBBS, MRCPCH, PhD, Kevin Strauss, MD
• Describe the typical orthopedic clinical issues of patients with CHH
• Identify typical radiologic features (orthopedic) of CHH
• Indicate the typical orthopedic problems of CHH that will likely require
surgical treatment
• Recognize the importance of preventative care in the CHH population
This conference is free thanks to the support of the Windows of Hope Genetics
Information Center/Alexander Fleming Dissemination Award. However, pre-registration
is required for attendance. Please complete and mail the form below to register.
Inherited Cardiac Conditions
Titus Dutcher, MD, Kenneth Zahka, MD
• Recognize the common inherited cardiac conditions in the community (hypertrophic
cardiomyopathy, long QT syndrome and propionic acidaemia) and formulate a
differential diagnosis and management plan
• Identify when it is appropriate to refer to cardiology
NAMETITLE
Hereditary Spastic Paraplegias
Nolan Byler, DO, Christos Proukakis, MBBS, FRCP, PhD
ORGANIZATION
• Recognize common causes of HSP in the plain population (GM2 synthase deficiency,
Troyer and Mast syndrome), differentiating clinical features, inheritance patterns, and
genetic counseling issues
• Develop skills in clinical management of HSP
Group discussion
Conference Agenda
Emma Baple, MBBS, MRCPCH, PhD, Olivia Wenger, MD
• Identify barriers to early diagnosis of inherited disease in Northeast Ohio’s plain people
• Develop strategies to improve the care of common inherited disorders in
our patient population
• Develop priorities for culturally appropriate, population based intervention
and preventative care within a medical home model
Faculty
Emma Baple, MBBS,
MRCPCH, PhD
Consultant Clinical Geneticist
University Hospital Southampton
Windows of Hope Project, Exeter
Margaret McBride, MD
Pediatric Neurologist
Akron Childrens Hospital
Akron, OH
Nolan Byler, DO
Family Practice
Mount Eaton, OH
Titus Dutcher, MD
East Holmes Family Practice
Walnut Creek, OH
ADDRESS
WORK PHONE
8:15 - 8:45 a.m.
Check-in
8:45 - 9:00 a.m.
Welcome
9:00 - 9:15 a.m.
Healthcare Delivery to Northeast Ohio’s Amish:
Historical Perspective
Olivia Wenger, MD
Brent Lehman, MD
Family Practice
Mount Eaton, OH
Elton Lehman, DO
Family Practice
Mount Eaton, OH
Kevin Strauss, MD
Pediatrician/Medical Director
Clinic for Special Children
Strasburg, PA
Olivia Wenger, MD
Pediatrician/Medical Director
New Leaf Clinic for Special
Children
Mount Eaton, OH
Dennis Weiner, MD
Pediatric Orthopedic Surgeon
Akron Childrens Hospital
Akron, OH
Kenneth Zahka, MD
Pediatric Cardiologist
Cleveland Clinic Childrens
Hospital
Cleveland, OH
Christos Proukakis, MBBS,
FRCP, PhD
Consultant Neurologist
University College
London, England
Elton Lehman, DO
Margaret McBride, MD, Kevin Strauss, MD, Olivia Wenger, MD
Case Presenters: Tom Herr, MD, Brent Lehman, MD 9:15 - 10:15 a.m.
10:15 - 10:30 a.m. 10:30 -11:15 a.m.
11:15 a.m. - 12:00 p.m. 12:00 - 1:00 p.m. Cartilage Hair Hypoplasia
1:00 - 1:45 p.m. Lunch
1:45 - 2:45 p.m.
Inherited Cardiac Conditions
Cases #1 and 2
Coffee Break
Case #3
Case #4
Dennis Weiner, MD, Emma Baple, MBBS, MRCPCH, PhD, Kevin Strauss, MD
Titus Dutcher, MD, Kenneth Zahka, MD
2:45 - 3:45 p.m. Hereditary Spastic Paraplegia
3:45 - 4:00 p.m. High Tea
4:00 - 5:00 p.m.
Nolan Byler, MD, Christos Proukakis, MBBS, FRCP, PhD
Group discussion
CELL PHONE
EMAIL ADDRESS
9:15 a.m. - 12:00 p.m. Neurodevelopmental Disorders
The Delayed, Fussy or Seizing Baby: Diagnosis is Possible!
Panel members: Emma Baple, MBBS, MRCPCH, PhD,
Thomas Herr, MD
Family Practice
Coon Valley, WI
CITYSTATEZIP
Emma Baple, MBBS, MRCPCH, PhD, Olivia Wenger, MD, Kevin Strauss, MD
Please check one:
o MD/DO
o APN
o RN/LPN
o ST/OT/PT
o Midwife
o Other ___________________________________________________________
For more information, call Arie Troyer at 330-359-9888
Mail form to:
Arie Troyer
New Leaf Clinic for Special Children
PO Box 336
15988B East Chestnut Street
Mt. Eaton, OH 44659
Registration Form
Conference Objectives
Neurodevelopmental Disorders
The Delayed, Fussy, or Seizing Baby: Diagnosis is Possible!
Panel members: Emma Baple, MBBS, MRCPCH, PhD,
Margaret McBride, MD, Kevin Strauss, MD,
Olivia Wenger, MD
Case Presenters: Tom Herr, MD, Brent Lehman, MD
• Recognize population-specific differential diagnoses for:
Hypotonia/Spasticity
Fussy infant
Failure to thrive
Developmental delay/intellectual disability
Epilepsy
Ataxia/Movement Disorders
Autism
• Describe how to investigate infants/children from the plain population
presenting with neurodevelopmental or neurodegenerative disorders
• Develop appreciation for multidisciplinary management strategies of
inherited neurodevelopmental disorders including:
Brittle hair syndrome
Cockayne syndrome
GM3 synthase deficiency
GM2 synthase deficiency
HERC2 related disorder (Blue Eye Delay syndrome)
KPTN related disorder (MASD syndrome)
MTPAP related spastic ataxia
Nephrocerebellar syndrome
SNIP1 related disorder (Symptomatic Epilepsy and Skull Dysplasia)
SAMHD1 Aicardi Goutieres syndrome
• Recognize inheritance patterns of common neurodevelopmental disorders
in the plain population
• Recognize the utility of early genetic testing in improving health care
outcomes and learn how to access this
Cartilage Hair Hypoplasia
Dennis Weiner, MD, Emma Baple, MBBS, MRCPCH, PhD, Kevin Strauss, MD
• Describe the typical orthopedic clinical issues of patients with CHH
• Identify typical radiologic features (orthopedic) of CHH
• Indicate the typical orthopedic problems of CHH that will likely require
surgical treatment
• Recognize the importance of preventative care in the CHH population
This conference is free thanks to the support of the Windows of Hope Genetics
Information Center/Alexander Fleming Dissemination Award. However, pre-registration
is required for attendance. Please complete and mail the form below to register.
Inherited Cardiac Conditions
Titus Dutcher, MD, Kenneth Zahka, MD
• Recognize the common inherited cardiac conditions in the community (hypertrophic
cardiomyopathy, long QT syndrome and propionic acidaemia) and formulate a
differential diagnosis and management plan
• Identify when it is appropriate to refer to cardiology
NAMETITLE
Hereditary Spastic Paraplegias
Nolan Byler, DO, Christos Proukakis, MBBS, FRCP, PhD
ORGANIZATION
• Recognize common causes of HSP in the plain population (GM2 synthase deficiency,
Troyer and Mast syndrome), differentiating clinical features, inheritance patterns, and
genetic counseling issues
• Develop skills in clinical management of HSP
Group discussion
Conference Agenda
Emma Baple, MBBS, MRCPCH, PhD, Olivia Wenger, MD
• Identify barriers to early diagnosis of inherited disease in Northeast Ohio’s plain people
• Develop strategies to improve the care of common inherited disorders in
our patient population
• Develop priorities for culturally appropriate, population based intervention
and preventative care within a medical home model
Faculty
Emma Baple, MBBS,
MRCPCH, PhD
Consultant Clinical Geneticist
University Hospital Southampton
Windows of Hope Project, Exeter
Margaret McBride, MD
Pediatric Neurologist
Akron Childrens Hospital
Akron, OH
Nolan Byler, DO
Family Practice
Mount Eaton, OH
Titus Dutcher, MD
East Holmes Family Practice
Walnut Creek, OH
ADDRESS
WORK PHONE
8:15 - 8:45 a.m.
Check-in
8:45 - 9:00 a.m.
Welcome
9:00 - 9:15 a.m.
Healthcare Delivery to Northeast Ohio’s Amish:
Historical Perspective
Olivia Wenger, MD
Brent Lehman, MD
Family Practice
Mount Eaton, OH
Elton Lehman, DO
Family Practice
Mount Eaton, OH
Kevin Strauss, MD
Pediatrician/Medical Director
Clinic for Special Children
Strasburg, PA
Olivia Wenger, MD
Pediatrician/Medical Director
New Leaf Clinic for Special
Children
Mount Eaton, OH
Dennis Weiner, MD
Pediatric Orthopedic Surgeon
Akron Childrens Hospital
Akron, OH
Kenneth Zahka, MD
Pediatric Cardiologist
Cleveland Clinic Childrens
Hospital
Cleveland, OH
Christos Proukakis, MBBS,
FRCP, PhD
Consultant Neurologist
University College
London, England
Elton Lehman, DO
Margaret McBride, MD, Kevin Strauss, MD, Olivia Wenger, MD
Case Presenters: Tom Herr, MD, Brent Lehman, MD 9:15 - 10:15 a.m.
10:15 - 10:30 a.m. 10:30 -11:15 a.m.
11:15 a.m. - 12:00 p.m. 12:00 - 1:00 p.m. Cartilage Hair Hypoplasia
1:00 - 1:45 p.m. Lunch
1:45 - 2:45 p.m.
Inherited Cardiac Conditions
Cases #1 and 2
Coffee Break
Case #3
Case #4
Dennis Weiner, MD, Emma Baple, MBBS, MRCPCH, PhD, Kevin Strauss, MD
Titus Dutcher, MD, Kenneth Zahka, MD
2:45 - 3:45 p.m. Hereditary Spastic Paraplegia
3:45 - 4:00 p.m. High Tea
4:00 - 5:00 p.m.
Nolan Byler, MD, Christos Proukakis, MBBS, FRCP, PhD
Group discussion
CELL PHONE
EMAIL ADDRESS
9:15 a.m. - 12:00 p.m. Neurodevelopmental Disorders
The Delayed, Fussy or Seizing Baby: Diagnosis is Possible!
Panel members: Emma Baple, MBBS, MRCPCH, PhD,
Thomas Herr, MD
Family Practice
Coon Valley, WI
CITYSTATEZIP
Emma Baple, MBBS, MRCPCH, PhD, Olivia Wenger, MD, Kevin Strauss, MD
Please check one:
o MD/DO
o APN
o RN/LPN
o ST/OT/PT
o Midwife
o Other ___________________________________________________________
For more information, call Arie Troyer at 330-359-9888
Mail form to:
Arie Troyer
New Leaf Clinic for Special Children
PO Box 336
15988B East Chestnut Street
Mt. Eaton, OH 44659
Registration Form
Conference Objectives
Neurodevelopmental Disorders
The Delayed, Fussy, or Seizing Baby: Diagnosis is Possible!
Panel members: Emma Baple, MBBS, MRCPCH, PhD,
Margaret McBride, MD, Kevin Strauss, MD,
Olivia Wenger, MD
Case Presenters: Tom Herr, MD, Brent Lehman, MD
• Recognize population-specific differential diagnoses for:
Hypotonia/Spasticity
Fussy infant
Failure to thrive
Developmental delay/intellectual disability
Epilepsy
Ataxia/Movement Disorders
Autism
• Describe how to investigate infants/children from the plain population
presenting with neurodevelopmental or neurodegenerative disorders
• Develop appreciation for multidisciplinary management strategies of
inherited neurodevelopmental disorders including:
Brittle hair syndrome
Cockayne syndrome
GM3 synthase deficiency
GM2 synthase deficiency
HERC2 related disorder (Blue Eye Delay syndrome)
KPTN related disorder (MASD syndrome)
MTPAP related spastic ataxia
Nephrocerebellar syndrome
SNIP1 related disorder (Symptomatic Epilepsy and Skull Dysplasia)
SAMHD1 Aicardi Goutieres syndrome
• Recognize inheritance patterns of common neurodevelopmental disorders
in the plain population
• Recognize the utility of early genetic testing in improving health care
outcomes and learn how to access this
Cartilage Hair Hypoplasia
Dennis Weiner, MD, Emma Baple, MBBS, MRCPCH, PhD, Kevin Strauss, MD
• Describe the typical orthopedic clinical issues of patients with CHH
• Identify typical radiologic features (orthopedic) of CHH
• Indicate the typical orthopedic problems of CHH that will likely require
surgical treatment
• Recognize the importance of preventative care in the CHH population
This conference is free thanks to the support of the Windows of Hope Genetics
Information Center/Alexander Fleming Dissemination Award. However, pre-registration
is required for attendance. Please complete and mail the form below to register.
Inherited Cardiac Conditions
Titus Dutcher, MD, Kenneth Zahka, MD
• Recognize the common inherited cardiac conditions in the community (hypertrophic
cardiomyopathy, long QT syndrome and propionic acidaemia) and formulate a
differential diagnosis and management plan
• Identify when it is appropriate to refer to cardiology
NAMETITLE
Hereditary Spastic Paraplegias
Nolan Byler, DO, Christos Proukakis, MBBS, FRCP, PhD
ORGANIZATION
• Recognize common causes of HSP in the plain population (GM2 synthase deficiency,
Troyer and Mast syndrome), differentiating clinical features, inheritance patterns, and
genetic counseling issues
• Develop skills in clinical management of HSP
Group discussion
Conference Agenda
Emma Baple, MBBS, MRCPCH, PhD, Olivia Wenger, MD
• Identify barriers to early diagnosis of inherited disease in Northeast Ohio’s plain people
• Develop strategies to improve the care of common inherited disorders in
our patient population
• Develop priorities for culturally appropriate, population based intervention
and preventative care within a medical home model
Faculty
Emma Baple, MBBS,
MRCPCH, PhD
Consultant Clinical Geneticist
University Hospital Southampton
Windows of Hope Project, Exeter
Margaret McBride, MD
Pediatric Neurologist
Akron Childrens Hospital
Akron, OH
Nolan Byler, DO
Family Practice
Mount Eaton, OH
Titus Dutcher, MD
East Holmes Family Practice
Walnut Creek, OH
ADDRESS
WORK PHONE
8:15 - 8:45 a.m.
Check-in
8:45 - 9:00 a.m.
Welcome
9:00 - 9:15 a.m.
Healthcare Delivery to Northeast Ohio’s Amish:
Historical Perspective
Olivia Wenger, MD
Brent Lehman, MD
Family Practice
Mount Eaton, OH
Elton Lehman, DO
Family Practice
Mount Eaton, OH
Kevin Strauss, MD
Pediatrician/Medical Director
Clinic for Special Children
Strasburg, PA
Olivia Wenger, MD
Pediatrician/Medical Director
New Leaf Clinic for Special
Children
Mount Eaton, OH
Dennis Weiner, MD
Pediatric Orthopedic Surgeon
Akron Childrens Hospital
Akron, OH
Kenneth Zahka, MD
Pediatric Cardiologist
Cleveland Clinic Childrens
Hospital
Cleveland, OH
Christos Proukakis, MBBS,
FRCP, PhD
Consultant Neurologist
University College
London, England
Elton Lehman, DO
Margaret McBride, MD, Kevin Strauss, MD, Olivia Wenger, MD
Case Presenters: Tom Herr, MD, Brent Lehman, MD 9:15 - 10:15 a.m.
10:15 - 10:30 a.m. 10:30 -11:15 a.m.
11:15 a.m. - 12:00 p.m. 12:00 - 1:00 p.m. Cartilage Hair Hypoplasia
1:00 - 1:45 p.m. Lunch
1:45 - 2:45 p.m.
Inherited Cardiac Conditions
Cases #1 and 2
Coffee Break
Case #3
Case #4
Dennis Weiner, MD, Emma Baple, MBBS, MRCPCH, PhD, Kevin Strauss, MD
Titus Dutcher, MD, Kenneth Zahka, MD
2:45 - 3:45 p.m. Hereditary Spastic Paraplegia
3:45 - 4:00 p.m. High Tea
4:00 - 5:00 p.m.
Nolan Byler, MD, Christos Proukakis, MBBS, FRCP, PhD
Group discussion
CELL PHONE
EMAIL ADDRESS
9:15 a.m. - 12:00 p.m. Neurodevelopmental Disorders
The Delayed, Fussy or Seizing Baby: Diagnosis is Possible!
Panel members: Emma Baple, MBBS, MRCPCH, PhD,
Thomas Herr, MD
Family Practice
Coon Valley, WI
CITYSTATEZIP
Emma Baple, MBBS, MRCPCH, PhD, Olivia Wenger, MD, Kevin Strauss, MD
Please check one:
o MD/DO
o APN
o RN/LPN
o ST/OT/PT
o Midwife
o Other ___________________________________________________________
For more information, call Arie Troyer at 330-359-9888
Mail form to:
Arie Troyer
New Leaf Clinic for Special Children
PO Box 336
15988B East Chestnut Street
Mt. Eaton, OH 44659
The conference is designed for clinicians and other health care workers,
educators, administrators and board members who serve the Anabaptist
(Amish and Mennonite) populations west of central Pennsylvania.
Continuing Education
Lodging
Call 330-852-6105/800-824-2013 to reserve a room. Be sure to mention the
“Windows of Hope” discount when making your reservation.
Childrens Hospital Medical Center of Akron is accredited by the Ohio State
Medical Association to provide continuing medical education for physicians.
Call Arie Troyer at 330-359-9888 if you prefer other lodging suggestions.
Childrens Hospital Medical Center of Akron designates this live educational
activity for a maximum of 6.75 AMA PRA Category 1 CreditsTM. Physicians
should only claim credit commensurate with the extent of their participation
in this activity.AMA PRA Category 1 credits are accepted by the Ohio Board
of Nursing for CEU. Nurses should only claim credit commensurate with the
extent of their participation in the activity.
The Pier at Lighthouse of Hope
10470 Winesburg Road
Dundee, Ohio
Ohio Department of Developmental Disabilities approval for Early Intervention
CEU’s is pending.
Registration
This conference is free. This conference is funded by a Medical Research
Foundation Alexander Fleming Dissemination Award.
Pre-registration is required. Registration deadline is April 15, 2015. Same-day
registration is not provided. Handouts, lunch and refreshments are included
with registration.
Special Accommodations
If you need special accommodations due to a disability, please notify
Arie Troyer at 330-359-9888 by April 15.
Planning Committee
Emma Baple, MBBS, MRCPCH, PhD
Andrew Crosby, PhD
Martha Horst, RN, MSN
Freda Miller
Kris Schmucker, MT(ASCP)
Arie Troyer, LPN
Olivia Wenger, MD
Katrina Wolford, CME Coordinator
Practical Approaches to
Amish Inherited Disease
A discounted rate of $135/night is available at the Wallhouse Hotel, Walnut Creek, OH
(www.wallhousehotel.com) for Friday April 24 and Saturday April 25.
Location/Directions
Saturday, April 25, 2015
8:45 a.m. - 5 p.m.
Note that Winesburg Road is also
county road 186. “The Pier” houses
Beacon Hill Community School.
The Pier/Beacon Hill Community School
10470 Winesburg Rd.
Mount Eaton, Ohio
From Akron/North: Follow 77-South to exit 104/30 West. Take 30 West to OH-241
exit toward Brewster/Mt. Eaton. Turn left onto Millersburg Road SW/OH-241. Follow
OH-241 8.5 miles into Mt Eaton. At the first Mt. Eaton red light/Red Tomato market,
turn right onto Main Street/US-250/OH-241. At the second Mt. Eaton red light, turn left
onto OH-241. Follow OH-241 0.3 miles to county road 186/Winesburg Road. Bear left
onto county road 186/Winesburg Road. Follow County Road 186/Winesburg Road 1.3
miles to The Pier. Enter the drive on the left.
From Walnut Creek/South: take Rt. 515 out of Walnut Creek (past Der Dutchman)
through Trail for 5 miles to Rt. 62. Turn right on Rt. 62 & follow that for 2 miles through
Winesburg to CR 186. Veer left onto CR 186 (by sign to Sojourner's Lodge). Follow CR
186 around a sharp left & it becomes Winesburg Rd. Stay on Winesburg Road for 3
miles. You will reach the Pier on your right. Look for a sign with a Lighthouse on it.
From Wooster/West: Follow OH-250 East into Mount Eaton. Turn right at the first
Mt. Eaton red light onto OH-241. Follow OH 241 south 0.3 miles to county road
186/Winesburg Road. Bear left onto county road 186/Winesburg Road. Follow
CR 186/Winesburg Road 1.3 miles to The Pier. Enter the drive on left.
Disclosure Statement
As a provider of the Ohio State Medical Association, it is the policy to require the
disclosure of the existence of any financial interest a planning committee member
and presenters have with either the commercial supporter(s) of this activity or the
manufacture(s) of any commercial product(s) discussed, and when necessary,
resolve any potential conflict. None of the planning committee members have a
financial conflict to disclose or resolve. The following presenters have the following
conflict to disclose:
Kenneth Zahka, MD: AIM Imaging
New Leaf Clinic for Special Children
PO Box 336
15988B East Chestnut Street
Mt. Eaton, OH 44659
Who Should Attend