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National Volunteer Network
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The National Volunteer Network (NVN) is the backbone of the NMF’s successful strategy to fulfill its mission at the local level. The NVN is the interconnected web of Chapters, Network Groups, Support Groups, Telephone Support Contacts, and the many individuals and families that volunteer to support our shared mission at the local level. The National Volunteer Network supports the NMF mission in three crucial ways: - Providing support and information to individuals and families affected by Marfan syndrome and related disorders
- Providing a strong volunteer force to implement NMF education and awareness programs in their communities
- Providing vital fundraising to support the NMF mission, education, research and support.
Becoming involved in the NVN is a positive way to help people live successfully with Marfan syndrome and related disorders. Activities provide members with opportunities to participate in a genuinely caring community that links NMF members locally and nationally. CHAPTERS
The purpose of a Chapter is to carry out the NMF mission at the local level. As a legal entity, with elected officers and a bank account, chapters serve a vital role in saving lives and improving the quality of life for affected persons by providing education and awareness, support for members, and fundraising to strengthen and grow NMF programs. NETWORK GROUPS
Local Network Groups enable members to meet in their own communities, without having to travel a long distance. Less formal than a Chapter, they have no elected officers or bank account. Some local groups operate as part of an established NMF Chapter located near them. Meeting topics and activities are directed toward informal support, education on Marfan syndrome and related disorders, outreach and fundraising projects. Establishing a Network Group is the first step to establishing a Chapter. SUPPORT GROUPS
A Support Group focuses solely on psychosocial support for affected members and their families. It is strongly recommended that this type of group is run by a professional, volunteer facilitator. A Support group may operate as a service offered by a nearby Chapter or Network Group, or may be established independently. TELEPHONE SUPPORT CONTACTS
Telephone Support Volunteers are the primary providers of NMF peer-to-peer support connections across the country. They are available by phone or e-mail and offer their own experience living with Marfan syndrome or a related disorder, as well as messages of hope, as a source of support to others. FIND A LOCAL GROUP/LOCAL TEEPHONE SUPPORT CONTACT
Key:
CH = Chapter
SG = Support Group
LN = Local Network Coordinator
TS = Telephone Support Volunteer
Here is a list of our contacts near you:
ALABAMA
There are currently no listings in this state. Please check nearby states, or you may contact the NMF Social Worker at (800)8-MARFAN x 22 support@marfan.org
ALASKA
There are currently no listings in this state. Please check nearby states, or you may contact the NMF Social Worker at (800)8-MARFAN x 22 support@marfan.org
ARIZONA
TS - Phoenix David Ledbetter 602/284-2727(cell) or 602/955-2192 dledbetter1@cox.net
TS - Phoenix Phyllis Collins 928/252-2574 we2goaz@cox.net
TS - Tucson Laura and Michael Faust 520/321-0742 mfaust@mmla-psomas.com
ARKANSAS
There are currently no listings in this state. Please check nearby states, or you may contact the NMF Social Worker at (800)8-MARFAN x 22 support@marfan.org
CALIFORNIA
TS - Del Mar Barbara Krueger 858/792-6061 bkrue@earthlink.net
TS - Fallbrook Susan Grossi-Pasillas 760/723-8500 susan@susangrossi.com
TS - Milpitas Maya Zimmerman 614/551-0609 maya.m.zimmerman@gmail.com
LN - Inland Empire Penny Slater 909/929-9333 or 909/515-4544 (cell) pennydotcalm@msn.com Nancy Wood 951/927-7907 nancywood1@verizon.net
LN - Los Angeles/Orange County (Visit Website) Regine Bluestein 310/391-4453 reginew33@aol.com Roelina Berst 310/476-6190 roelinab@roadrunner.com Lisa Jeffries 714/429-0753 alizaj@ca.rr.com
LN - Marin County Heidi Law 415/507-9898 heidi@bakinaction.com
LN - Redding Kim Nemchick 530/222-4839 blingiton6@yahoo.com
TS - Ridgecrest Cathy Banks 760/375-5059 dsnurse@verizon.net
LN - Sacramento (Visit Website) Susan Meier 916/632-3214 susan.meier@starstream.net
Carrie Reinsimar carriercares@yahoo.com
LN - San Diego Sue Aguiar 619/464-3228 sioux1947@hotmail.com
CH – Northern California Chapter (Visit Website) Susan Meier susan.meier@starstream.net
TS - San Francisco Vicky Prager 415/665-7244 vprager@california.com
LN - Central Coast Network Group Christina Arakaki 805/937-4568 harakaki@concentric.net
COLORADO
LN - Colorado Springs Lisa Symonds 719/302-3981 lzultz@yahoo.com
TS - Montrose Dan Parker 970/323-5480
TS - Platteville Marilyn Lannon 970/785-6152 marilyns1022@yahoo.com
CONNECTICUT
TS - Old Saybrook Eileen Ilberman 860/339-5236 BIEIEIO@msn.com
DELAWARE
TS - Wilmington Laurie Gelb 302/654-3523 lmgelb@comcast.net
FLORIDA
TS - Gulfport Gail Page 727/345-9099 HockeMum54@aol.com
TS - Naples Ken Robins 239/594-8356
TS - Sanibel Elizabeth Carr 239/395-3410 EWCarr39@aol.com
LN -Southwest Florida-Barbara Cuddihy, 941-575-9080; captiva6@comcast.net
GEORGIA
TS - Alpharetta Nina Styles 770/569-5154 ninastyles@comcast.net
LN - Atlanta Kate and Adam Kauffman (Visit Website) 404/841-8429 atlantamarfan@gmail.com
TS - Madison David Vaughan 706/752-1017 davaughan@msn.com
TS - Marietta Carol Baumgartner 770/518-9088 carolhbaum@comcast.net
TS - Roswell Cathy Strmac 770/998-4968 marcatstrmac@aol.com
TS - Roswell Kevin Gathmann 770/518-0951 illt@aol.com
HAWAII
TS - Kapolei Donna Decker 808/672-7199 ddecker@fnf.com
IDAHO
LN - Kuna Patty and Earl Hamm 208/362-1907 hammclan@msn.com
LN - Network Group of the Northwest (Visit Website) Lorie Beck 509/551-5568 ty_ree_b@yahoo.com
ILLINOIS
LN - Bloomington (Visit Website) Michele Jensen 309/829-3902 mdjensen1@comcast.net
CH - Capitolo Hispano De Illinois (Spanish Speaking) Josefa Villarrobia 773/988-1616 ysoj@yahoo.com
TS - Rockford Sandy Welte 815/877-6748
CH- Northern Illinois Chapter Bruce Klein 630/415-0044 bklein01@sbcglobal.net
INDIANA
LN - Northeast Indiana (Visit Website) Ellen England 260/925-4041 eeengland@gmail.com, Melody Franklin: 260/490-0164 frankiex5@verizon.net, Beth Dawson 260/632-3553 whitternrd@verizon.net
LN - Central Indiana Natalie Wenzel 317/388-0725 ncwenzel@google.com
TS - Otwell Joy Gideon Zuger 812/354-2477
TS - Zionsville Danielle Burrus 317/873-5199 dburrus@indy.rr.com
IOWA
LN - Eastern Iowa Heartland (Visit Website) Marsha Jones 319/461-4228 iowamarf@hotmail.com
TS - Indianola Beverley Kiefer 515/961-6447 dbkiefer@mchsi.com
CH - Heart of Iowa Chapter Teri Dean 515/263-1948 tkdean11@mchsi.com
TS - Urbandale Kari Dostalik 515/252-1892 bandlum@msn.com
KANSAS
There are currently no listings in this state. Please check nearby states, or you may contact the NMF Social Worker at (800)8-MARFAN x 22 support@marfan.org
KENTUCKY
LN - Danville Mary Burchett 859/771-6922 mary.burchett@centre.edu
LN - Louisville Anne Hinds 502/426-9173 ahinds@bellsouth.net
TS - Louisville Linda Sinclair 502/426-7982 Louavullgal@hotmail.com
LOUISIANA
TS - Baton Rouge Mary White 225/892-1568 bnmwhite@cox.net
TS - Mandeville Alesia Mahony 985/373-2210 kmahony@bellsouth.net
LN - Southeast Louisiana Nancy Giacone: 504/889-9988; ngiacone@mac.com
MAINE
LN - Gorham Merrill Henderson 207/839-8637 mhender1@maine.rr.com
MARYLAND
LN - Baltimore/DC/Northern Virginia Metro Area Mary Ahearn 301/933-2112 mahearn54@aol.com
TS - Silver Spring Betsy Gaffney 301/598-1979
MASSACHUSETTS
SG - Groveland Inez Steele 978/314-9706 inezsteele@yahoo.com
CH - Massachusetts Chapter Suzanne Kouri 781/862-6398, 781/248-8743(Cell) kouri34@aol.com MICHIGAN
TS - Detroit Judith Reed Ligosky 313/824-0509 judith@ropl.org
LN - Detroit (Visit Website) Li Li 313/823-2609 lily2141@yahoo.com
TS - Rochester Kimberly Natzke 248/930-0708 kjnatzke@wideopenwest.com
MINNESOTA
TS - Alexandria Tara Bitzan 320/834-5403 tara@echopress.com
LN - St. Cloud Shelly Harren 329/573-4109 harrens@centracare.com
CH - Twin Cities Chapter (Visit Website) Heather Hinton 651/251-3870 heather.hinton@wellsfargo.com
MISSISSIPPI
TS - Ocean Springs Renita Salzillo 541/844-1816 renitann17@yahoo.com
MISSOURI
TS - Joplin Cindy Parsons 720/890-2961 cindy_cindyann@hotmail.com
LN - Kansas City (Visit Website) Vicki Asbury 816/741-8159 jdspicher@aol.com
CH - St. Louis St. Louis Chapter Dewayne Thompson and Toya Thompson 314/831-0776 toya.thompson@nationalcity.com dewaynethompsonwmt@yahoo.com
TS - St. Louis Cheryl & Robert Rauschenbach 314/225-8433 rauschfam@usclub.com
MONTANA
There are currently no listings in this state. Please check nearby states, or you may contact the NMF Social Worker at (800)8-MARFAN x 22 support@marfan.org
NEBRASKA
LN - Omaha (Visit Website) Sherry Heldt 402/932-4504 roshawco@hotmail.com Debra Flearl 402/455-9342 Jeni Guzinski 402/586-3018
NEVADA
LN - Reno Christie Wilson 775/355-0770 heart4heart@sbcglobal.net Charlotte Rowe 775/355-8844 rowe1@prodigy.net
NEW HAMPSHIRE
LN - Southeast New Hampshire Rene Jones 603/628-5811 renejones@us.schneider-electric.com
TS - Salem Kaddy Ackroyd 603/893-0485 Kaddy1953@peoplepc.com
NEW JERSEY
LN - Cranford (Visit Website) Jane Glass 908/276-2395 j3glass@gmail.com
CH - PennJersey Chapter (Visit Website) Dan Makanoff 856/751-1796 dmakanoff@comcast.net
TS - Freehold Barbara & Stephen Hawthorne 732/761-1373
TS - Jackson Myra Pomponio 732/905-0978
TS - Lawrenceville Beth Brobst 609/896-7960
TS - Madison Lucy Porter 973/822-2346 lucyhporter@aol.com
TS - Vernon Nancy Curry 973/827-2674 kcnc87@embarqmail.com
TS - Madison Alexandra McLean Jennings 973/377-4730 alixmclean@yahoo.com
LN - Washington Township Vicky Arias 201/664-3122 varias@wwrsd.org , Luis Arias: 201/722-9674; lou.arias@gmail.com,
NEW MEXICO
There are currently no listings in this state. Please check nearby states, or you may contact the NMF Social Worker at (800)8-MARFAN x 22 support@marfan.org
NEW YORK
TS - Bronx Monica Jacques 718/671-7291 moniy28@netscape.net
TS - Brooklyn Anthony Smith 718/258-5520
TS - Latham Barbara Shields 518/785-9565 Barbara764@aol.com
TS - Long Island Cheryl Williams 516/678-4851 dwilli7171@aol.com
LN - New York Metro Area (Visit Website) Steve Marpman 718/464-5892 srm2@verizon.net Lisa Ritell 914/450-4091 LisaRit2@aol.com
TS - New York City Meryl Colman 212/988-3291 colmanm@hss.edu
TS - Palmyra Tracy Wood 315/597-6062 tracer0505@yahoo.com
TS - Saratoga Gregory Head 518/886-8439 cardiacnurse1961673@aol.com
TS - West Seneca Susan Leisner 716/912-5539 susanm8652@aol.com
NORTH CAROLINA
LN - Fayetteville Virginia Hill 910/978-4655 vlomhill02@aol.com
Karen Moore mooreunlimited@yahoo.com
TS - Kinston Vickie Joyner 252/523-0551or 252/286-6886 (cell) phat_emt@yahoo.com
LN - Eastern North Carolina (Visit Website) Vickie Dalton 252/353-5505 dalton447@aol.com
NORTH DAKOTA
TS - Bismarck Selma Ding 701/221-2063 selmading@hotmail.com, Dena Kemmet 701/873-7754; dena.kemmet@ndsu.edu
OHIO
TS - Cleveland Sue Janowitz 440/585-0068 namedropp@aol.com
LN - Cleveland Kristen Miller 216/771-5379 kristenleighmiller@hotmail.com
TS - Cleveland Heights Maya Brown 614/551-0609 maya.brown@case.edu
LN - CentralOhio Scott Osterholt 740/879-3416 sosterholt@insight.rr.com
LN - Dayton (Visit Website) Sheila Shawen 937/293-7926 gshawen@woh.rr.com
Lynn Smith 937/440-9339 callsmith1988@msn.com
TS - Newark Barbara Bowling 740/344-7969 WBowling@webtv.net
TS - Springfield Rita Eisman 937/322-1741
TS - Tallmadge Cheryl Alderson 330/633-2164 calderson61@hotmail.com
LN - Toledo (Visit Website) Mary Ann Nowacki 419/474-5470 nowackima@buckeye-express.com
OKLAHOMA
TS - Claremore Mendie Campbell 918/341-5347 mlcsslegs@aol.com
TS - Tulsa Carol McLean 918/333-1201
OREGON
TS - Prineville Nancy Daeges 971/241-3276
TS - Western Oregon Renita Salzillo 541/844-1816 renitann17@yahoo.com
LN - Network Group of the Northwest (Visit Website) Lorie Beck 509/551-5568 ty_ree_b@yahoo.com
PENNSYLVANIA
LN - Carlisle (Southcentral PA) (Visit Website) Jennifer Hawbaker 717/243-8970 jlynne@embarqmail.com Cindy Strupp 717/249-9374 timandcindy1935@comcast.net
TS - Clarks Summit Sherry & Greg Wall 570/587-9931 sherryannwall@yahoo.com
CH - PennJersey Chapter (Visit Website) Dan Makanoff 856/751-1796 dmakanoff@comcast.net
TS - Irwin Mark Oesterlin 412/751-1127 oesterlinmj@comcast.net
TS - State College Ronald & Ann Brokloff 814/238-5325 ronbrokloff@webtv.net
RHODE ISLAND
TS - Cumberland Adrienne Shafer 401/658-1719 ashafer28@cox.net
SOUTH CAROLINA
TS - Goose Creek Ginger Bevis 843/824-5245 gbevis@comcast.net
SOUTH DAKOTA
There are currently no listings in this state. Please check nearby states, or you may contact the NMF Social Worker at (800)8-MARFAN x 22 support@marfan.org
TENNESSEE
TS - Germantown Sara Pearce 901/412-0263 girlfrtn23@aol.com
TEXAS
LN - Dallas - Fort Worth Gerri Ryan 972/248-7757 ryanjgd@aol.com
Brian Wimberly 713/272-7654 bswimberly@yahoo.com
LN - Houston (Visit Website) Barbara Levy 713/721-7654; cyjnurse@yahoo.com / Pamela Bryson 281/859-3034 brysonpa@sbcglobal.net
TS - Keller Marybeth Bohn 817/431-3244
TS - Lubbock Judy Dewbre 806/794-7227 judy.dewbre@gmail.com
LN - San Antonio (Visit Website) Kathy Magee 210/442-8265 katachat@hotmail.com
TS - San Antonio/New Braunfels Karen Hill, R.N. 210/595-3951 KHILL85@SATX.RR.COM
TS - Waco Jack Riley 817/776-5203 jriley@hot.rr.com
UTAH
TS - Draper Ruth Norton 801/557-1420
LN - Salt Lake City Debbie Jones 435/654-1664 Debbie.jones@questar.com
VERMONT
There are currently no listings in this state. Please check nearby states, or you may contact the NMF Social Worker at (800)8-MARFAN x 22 support@marfan.org
VIRGINIA
TS - Herndon Rita Ahearn 703/437-0846 Rita_Ahearn@yahoo.com
LN - Richmond Area Lisa Riiber 804/739-8039 riiber@comcast.net Woody Del Corso 804/247-2358 idelcorso@vt.edu
WASHINGTON, D.C.
LN - D.C. Metro Area Mary Ahearn 301/933-2112 mahearn54@aol.com
WASHINGTON STATE
TS - Federal Way Sally Tomson 253/941-2523 stomson98003@foxinternet.net
LN - Network Group of the Northwest (Visit Website) Larie Beck 509/551-5568 ty_ree_b@yahoo.com
TS - Lacey Mary Barrett 360/493-1811 barretturner@comcast.com WISCONSIN
LN Milwaukee Amanda Jungkuntz 262/628-2366 ajjungkuntz@yahoo.com WYOMING
There are currently no listings in this state. Please check nearby states, or you may contact the NMF Social Worker at (800)8-MARFAN x 22 support@marfan.org
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