Participants at the Third International NBIA Disorders Association Family Conference

The Scientific & Medical Advisory Board with the Board of Trustees of NBIA Disorders Association at the Third International Family Conference. Advisory Board member Steven Richieri not pictured.

Panel Speakers Patti Hacket, Brianne Schwantes and Brigid Guttmacher share with NBIA families

 

Gerry Barbiero (NY) and Kris McGourthy (MA) lead session on the BioBank
 

Bela Ferreira-Barbiero (NY), Kris McGourthy (MA)and Cheryl Lamos (NY) lead session on work, school and medical options available 

Dietmar & Matthias Klucken (Germany)

Tracie & Jessie Huffman (NC)

Carsten Zell (Germany)   

Aneta and Kamil Augustyniak (Poland)

Cheryl Lamos (NY)
   

Dr. Penny Hogarth, Dr. Susan Haylick and Patty Wood at research exchange session

Dr. Jane Gitschier (CA) speaks
at research exchange session 

Suzanne Jackowski, Ph.D., shares
her research history with families

Shawn Westaway (OR) shares at research exchange session 

Dr. Hayflick speaks at the research exchange session

Dr. Monika Ebhardt (Germany) at research exchange session

Dr. Terry Sanger and Patty Wood at Happy Hour reception

Happy Hour reception on Friday evening
 

Valentina, Anna and Nicola Pascale (Italy) with conference sponsor, Vicky Stapleton

Patty Wood and Diane Murdock at reception on Friday night 

Mingling at the Happy Hour reception
 

Mike McGourthy (MA), Treasurer Jeff Doerner (CA) and Ian Brown (Australia) discuss information shared at the conference

conference session

 

Pam, Kenny & Jeff Stromsta 

Dietmar Klucken (Germany)

Kimbi Wood and her aide, Tanya Ball enjoy some downtime together

Stephan Klucken (Germany)
 

Pasquale Family (Italy)with Diane Murdock

Slava, Maria and Olah Buchkovich (WI) 

Fran Kenst, Pat Jordan, Brent and Melinda Fry (OH)

Kimberly and Patty Wood

Ashley Middendorf (IL)
 

Volunteer Diane Murdock (IN) handles registrations at the conference 

Volunteer Vicky Stapleton (OH) works to make the conference run smoothly
 

Board member Sue Laupola, Howard University genetic counselor volunteer Tiffiney Greer, board members Mary Ann Roser and Mary Tapke

Dr. Susan Haylfick(OR) presents her current work at the family conference

Nicola, Valentina and Anna Pascale (Italy)
 

listening to information given at conference session

 

Board members Mary Ann Roser (TX) and Mary Tapke (OH), with Slava & Maria Buchkovich at breakfast

Matthias, Dietmar and Stephan Klucken with Carsten Zell at family conference session

Ron, Jonathan and Donna Stretter with Jim and Tom Hayes

Ashley Middendorf with her mother, Donna Helton and stepfather, Rick Helton (IL)

A break for lunch before the next session
 

Bela Ferreira-Barbiero and Kris McGourthy show off their balloon hats

Diane Murdock is putting together the registration packets the night before the conference begins

Mary Tapke working on registration packets for conference

Vicky Stapleton getting banners ready for the conference

Board member Mary Tapke enjoying some time off after the sessions

Jeff Doerner, Treasurer (CA) and Patty Wood (CA) outside hotel at conference

Kimbi Wood on shopping trip at shops next to hotel.
 

Kimbi Wood with her aunts Diane Murdock and Vicky Stapleton and mother, Patty Wood

Patty Wood and Diane Murdock

Mary Tapke, board member from Cincinnati, Ohio