Contact Us
We are here for you. The Phelan-McDermid Syndrome Foundation (PMSF) is headquartered in Osprey, Florida. Our Chief Executive Officer and small support staff work in the home office while other staff members work remotely across the United States. We work with our growing family membership, support community, scientific and medical advisors, academia, industry, and board leadership to accomplish the PMSF’s goals.
The PMSF Staff
We welcome your questions, comments and suggestions. Please contact us at our headquarters or send an email directly to one of our staff members listed below. Click here to view staff bios.
| Title | Name | |
|---|---|---|
| Chief Executive Officer | Ronni Blumenthal | ronni@pmsf.org |
| Sr. Director of Operations | Diane Linnehan | diane@pmsf.org |
| Finance Director | Priscilla Hackstadt | priscilla@pmsf.org |
| Director of Development | Shira Johnson, CFRE | shira@pmsf.org |
| Chief Science Officer | Lauren Schmitt, PhD | lauren@pmsf.org |
| Director of Communications | Amanda Bergen | amanda@pmsf.org |
| Director of Family Support | Carla D'Imperio | carla@pmsf.org |
| Data Manager | Kathy Fiscus | kathy@pmsf.org |
| Accounting | Elinor Platt | elinor@pmsf.org |
The PMSF Regional Representatives
The Phelan-McDermid Syndrome Foundation’s (PMSF’s) Regional Representatives (REPs) are key volunteer resources for those affected by Phelan-McDermid syndrome (PMS) around the world. Your region’s representative is a peer support resource, an experienced PMS parent, who can help families network with each other and provide guidance for accessing information regarding your area’s medical, therapeutic, educational services. The REPs organize regional gatherings which are great opportunities to share advice, stories, and strategies as well as build friendships.
Some international regions also have established organizations that have a Global Partner agreement with PMSF. Your REP can tell you if your area has a Global Partner organization.
US Regional Representatives
| STATE | REGION | REP NAME | REP EMAIL |
|---|---|---|---|
| Alabama | Region 5 (South) | Erica Cox | ericacox.pmsf@gmail.com |
| Alaska | Region 1 (North) | OPEN | carla@pmsf.org |
| Arizona | Region 3 (West) | OPEN | carla@pmsf.org |
| Arkansas | Region 3 (North) | Lacy Biram | lacy.pmsf@gmail.com |
| California | Region 1 (South) | Lori Levi, MD | lorilevi.pmsf@gmail.com |
| Colorado | Region 3 (West) | OPEN | carla@pmsf.org |
| Connecticut | Region 4 (North) | Sue Joinson | suejoinson.pmsf@gmail.com |
| Delaware | Region 4 (South) | OPEN | carla@pmsf.org |
| Florida | Region 5 (South) | Devin Wilber | devin.pmsf@gmail.com |
| Georgia | Region 5 (South) | OPEN | carla@pmsf.org |
| Hawaii | Region 1 (South) | OPEN | carla@pmsf.org |
| Idaho | Region 1 (North) | OPEN | carla@pmsf.org |
| Illinois | Region 9 | OPEN | carla@pmsf.org |
| Indiana | Region 9 | Chrissy Kaiser | chrissykaiser.pmsf@gmail.com |
| Iowa | Region 2 | Kendra Richards-Hegedus | kendra.pmsf@gmail.com |
| Kansas | Region 3 (North) | OPEN | carla@pmsf.org |
| Kentucky | Region 9 | Hope French | hopefrench.pmsf@gmail.com |
| Louisiana | Region 3 (South) | OPEN | carla@pmsf.org |
| Maine | Region 4 (North) | Carla D'Imperio | carla@pmsf.org |
| Maryland | Region 4 (South) | Carla D'Imperio | carla@pmsf.org |
| Massachusetts | Region 4 (North) | Kelsey Guindon | kelsey.pmsf@gmail.com |
| Michigan | Region 9 | Erin Pitkowicz | erinp.pmsf@gmail.com |
| Minnesota | Region 2 | Cynthia Schauss | Cynthia.pmsf@gmail.com |
| Mississippi | Region 5 (South) | Erica Cox | ericacox.pmsf@gmail.com |
| Missouri | Region 3 (North) | Courtney Henderson | missouri.pmsf@gmail.com |
| Missouri | Region 3 (North) | Heather Warren | missouri.pmsf@gmail.com |
| Montana | Region 1 (North) | OPEN | carla@pmsf.org |
| Nebraska | Region 2 | Cynthia Schauss | Cynthia.pmsf@gmail.com |
| Nevada | Region 1 (South) | OPEN | carla@pmsf.org |
| New Hampshire | Region 4 (North) | Carla D'Imperio | carla@pmsf.org |
| New Jersey | Region 4 (Central) | Andrea Papageorgiou | njgroup.pmsf@gmail.com |
| New Jersey | Region 4 (Central) | Pam Kurtz | njgroup.pmsf@gmail.com |
| New Mexico | Region 3 (West) | Stephanie Kleven | NewMexico.pmsf@gmail.com |
| New York | Region 4 (Central) | Amy McCloskey | amy.mccloskey.pmsf@gmail.com |
| New York City Metro | Region 4 (Central) | Cara Dubinsky | nycmetro.pmsf@gmail.com |
| North Carolina | Region 5 (North) | Jennifer Cento | NC.pmsf@gmail.com |
| North Dakota | Region 2 | Cynthia Schauss | Cynthia.pmsf@gmail.com |
| Ohio | Region 9 | Jessica Butler | jessicabutlerpmsf@gmail.com |
| Oklahoma | Region 3 (North) | OPEN | carla@pmsf.org |
| Oregon | Region 1 (North) | Cindy Barnett | cindyb.pmsf@gmail.com |
| Pennsylvania | Region 4 (Central) | Sarah Jacobson | sarah.pmsf@gmail.com |
| Rhode Island | Region 4 (North) | Sue Joinson | SueJoinson.pmsf@gmail.com |
| South Carolina | Region 5 (North) | Mandy Whittimore | mwhittimore.pmsf@gmail.com |
| South Dakota | Region 2 | Cynthia Schauss | Cynthia.pmsf@gmail.com |
| Tennessee | Region 5 (North) | Chrissy Hood | chrissyh.pmsf@gmail.com |
| Texas | Region 3 (South) | Jenn Carter | jenncarterpmsf@gmail.com |
| Utah | Region 3 (West) | OPEN | carla@pmsf.org |
| Vermont | Region 4 (North) | Carla D'Imperio | carla@pmsf.org |
| Virginia | Region 4 (South) | Carly Durvin | virginia.pmsf@gmail.com |
| Washington | Region 1 (North) | OPEN | carla@pmsf.org |
| Washington D.C. | Region 4 (South) | OPEN | carla@pmsf.org |
| West Virginia | Region 4 (South) | OPEN | carla@pmsf.org |
| Wisconsin | Region 2 | Jamie Vande Hey | jamievandehey.pmsf@gmail.com |
| Wisconsin | Region 2 | Kris Graff | KrisGraff.pmsf@gmail.com |
| Wyoming | Region 1 (North) | OPEN | carla@pmsf.org |
International Representatives
| COUNTRY/AREA | REGION | REP NAME | REP EMAIL |
|---|---|---|---|
| Albania | Region 17 | Gaby Reimann | gaby.reimann@web.de |
| Algeria | Region 23 | OPEN | info@pmsf.org |
| Australia | Region 8 | Megan Toole/Amber Jones | pmsfaustralia@outlook.com.au |
| Austria | Region 17 | Gaby Reimann | gaby.reimann@web.de |
| Belgium | Region 13 | OPEN | info@pmsf.org |
| Bosnia | Region 17 | Gaby Reimann | gaby.reimann@web.de |
| Brazil | Region 11 (East) | Claudia Spadoni | claudia.spadoni@uol.com.br |
| Brunei | Region 18 | Nadiah Hanim Abdul Latif | nadiahhanim.rd@gmail.com |
| Bulgaria | Region 17 | Gaby Reimann | gaby.reimann@web.de |
| Canada | Region 7 | Andrea Volk | andrea.volk@pmsfcanada.org |
| Central America | Region 11 (Central) | Norma Alhambra | norma.alhambra@22q13.org.es |
| China | Region 20 | Susie Yuan | susie.yuan@outlook.com |
| China | Region 20 | Tiffany Wu | tiffany_118@163.com |
| Croatia | Region 17 | Gaby Reimann | gaby.reimann@web.de |
| Czech Republic | Region 17 | Gaby Reimann | gaby.reimann@web.de |
| Denmark | Region 16 | Torunn Borgersen | trb@markvn10.com |
| Finland | Region 16 | Torunn Borgersen | trb@markvn10.com |
| France | Region 13 | Julia Bouchet | juliabouchet33@gmail.com |
| France | Region 13 | Nadège Burns | tehanipms@gmail.com |
| Germany | Region 17 | Gaby Reimann | gaby.reimann@web.de |
| Greece | Region 21 | Rodoula Papafingos | rodapabe@yahoo.gr |
| Herzegovina | Region 17 | Gaby Reimann | gaby.reimann@web.de |
| Hungary | Region 17 | Gaby Reimann | gaby.reimann@web.de |
| Iceland | Region 16 | Torunn Borgersen | trb@markvn10.com |
| India | Region 8 | Megan Toole/Amber Jones | pmsfaustralia@outlook.com.au |
| Indonesia | Region 18 | Nadiah Hanim Abdul Latif | nadiahhanim.rd@gmail.com |
| Israel | Region 21 | Adi Cydulkin | |
| Israel | Region 21 | Rinat Cohen | rinatcohenn@gmail.com |
| Italy | Region 15 | Arianna Laghi | arianna@generalfishtrade.com |
| Japan | Region 18 (East) | Shiori Segawa | shiori.a.s@gmail.com |
| Japan | Region 18 (East) | Yuka Otsuji | info@pmsf.dk |
| Latvia | Region 17 | Gaby Reimann | gaby.reimann@web.de |
| Luxembourg | Region 13 | OPEN | info@pmsf.org |
| Macedonia | Region 17 | Gaby Reimann | gaby.reimann@web.de |
| Malaysia | Region 18 | Nadiah Hanim Abdul Latif | nadiahhanim.rd@gmail.com |
| Malta | Region 15 | Arianna Laghi | arianna@generalfishtrade.com |
| Mexico | Region 10 | Alejandra Mendoza | mendozale@hotmail.com |
| Moldova | Region 17 | Gaby Reimann | gaby.reimann@web.de |
| Montenegro | Region 17 | Gaby Reimann | gaby.reimann@web.de |
| Morocco | Region 13 | OPEN | info@pmsf.org |
| Netherlands | Region 14 | Els Kuiper | elskui@gmail.com |
| New Caledonia | Region 8 | Megan Toole/Amber Jones | pmsfaustralia@outlook.com.au |
| New Zealand | Region 8 | Megan Toole/Amber Jones | pmsfaustralia@outlook.com.au |
| Norway | Region 16 | Torunn Borgersen | trb@markvn10.com |
| Oman | Region 18 | Nadiah Hanim Abdul Latif | nadiahhanim.rd@gmail.com |
| Philippines | Region 18 | Nadiah Hanim Abdul Latif | nadiahhanim.rd@gmail.com |
| Poland | Region 19 | Beata Skowron | skowronek188@gmail.com |
| Portugal | Region 12 (South) | Ana Domingos | domingos.ana@gmail.com |
| Portugal | Region 12 (South) | Rui Barbosa Guedes | rui.barbosaguedes@gmail.com |
| Qatar | Region 18 | Nadiah Hanim Abdul Latif | nadiahhanim.rd@gmail.com |
| Romania | Region 17 | Gaby Reimann | gaby.reimann@web.de |
| Russian Federation | Region 22 | Ekaterina Demidova | ekd@ngs.ru |
| Serbia | Region 17 | Gaby Reimann | gaby.reimann@web.de |
| Singapore | Region 18 | Nadiah Hanim Abdul Latif | nadiahhanim.rd@gmail.com |
| Slovakia | Region 17 | Gaby Reimann | gaby.reimann@web.de |
| Slovenia | Region 17 | Gaby Reimann | gaby.reimann@web.de |
| South Africa | Region 23 | OPEN | info@pmsf.org |
| South America | Region 11 (South) | Norma Alhambra | norma.alhambra@22q13.org.es |
| South Korea | Region 18 | Nadiah Hanim Abdul Latif | nadiahhanim.rd@gmail.com |
| Spain | Region 12 (North) | Juan Ramón Rodríguez | juanramonrh@gmail.com |
| Spain | Region 12 (North) | Norma Alhambra | norma.alhambra@22q13.org.es |
| Sweden | Region 16 | Torunn Borgersen | trb@markvn10.com |
| Switzerland | Region 17 | Gaby Reimann | gaby.reimann@web.de |
| Taiwan | Region 20 | Chialin Frank Chu | frank10056@gmail.com |
| Thailand | Region 18 | Nadiah Hanim Abdul Latif | nadiahhanim.rd@gmail.com |
| The United Kingdom & Ireland | Region 6 | Lynda White | lyndawhite@pmsf.org.uk |
| Turkey | Region 21 | Ubeyd Baş | ubeydbas@gmail.com |
| Ukraine | Region 22 | Ekaterina Demidova | ekd@ngs.ru |