Dear ES list,
This list will come in handy when the ES Support Server goes down again...you
will still have your support group's Email addresses and you won't feel alone.
Please feel free to email me and let me know if this information is accurate, IF
YOU WANT TO BE ADDED TO THE LIST, and if you want me to add or remove
anything.
Love,
Norma
Note:
If they are in the Photo Gallery, a link is provided by clicking their name. If the name is in red, there is a picture of in the photo gallery of them as well.
To email an individual, in the Email Address column, click on the person's email address.
|
Name |
Email Address |
Other Info |
|
Barry Sugarman |
San Antonio, TX Dad to Alon, dx 3/6/98 ES of distal femur. |
|
|
Gary Suboter |
El Paso, Tx. (former Kansan) |
|
| Adele Roblin (was Syswerda) | 1adeles@attbi.com | Grand Rapids, Michigan
Mother to Paul ((6/18/1981 - 1/15/2001) |
| Alisa | alisa@TRIB.COM | Wyoming |
| Anne Amadore | aamedore@nycap.rr.com |
We live in Saratoga Springs NY and Andrew
is treated at Albany Med. Andrew is age
15 mo. DX May,2002 with PNET of Mastoid bone with mets to marrow.
Chemo: six rounds (as of 8/02) with positive response; reduced tumor
size and clean marrow.
|
| Amy Levinson |
amylynne@ALASKA-CPAS.COM | |
| Angela | red1090@YAHOO.COM | Indiana - cousin to Amy, 20 yr, dx 07/25/01 Rt femur |
|
Burnet, Texas |
||
| Betty | mamma_bear@JUNO.COM | New York Mom to Zach, 11 yr., dx ES Rt arm 3/99, OT 2/00, local recur. 12/00, on treatmt til 1/02 |
| Bill & Sandy |
sschuma@AOL.COM | Madison, Wisconsin Parents to Sarah 7-1-77 to 12-11-99 |
| Brad Wilson | SpikeinTX@AOL.COM | Austin, TX, dx PNET 2/98 |
| Butch Landry | blandry5068@cox.net | My wife, Patsy, has been in treatment for Ewing Sarcoma since March, 2002. |
| Cathy | ladyfish37@yahoo.com | Southport, NC Mom to James, 19 yr., DX 4/99, Left femur, chemo completed 3/00; relapse in lung 9/18/01; surgery 10/31/01) |
| Charlie | Accentcsc@CS.COM | Dad of Bill who was dx'd Jan, '01, ES rt prox femur 9 cm long; bravely endured the treatment protocol, including radiation but no surgery, finishing Oct, '01; clear scans 10-30; Hickman removed 11/27; clear scans Feb, '02!" |
| Cindy | CKeller778@AOL.COM | Portland, OR. Mom to Brittany 15yr. ,dx 1/10/01 ES in Rt hip, Rt thigh & pelvis w/ some mets to lungs |
| Debi Braun | abraun@tc3net.com | Tecumseh, Michigan Mom to Rachel, dx 4/97 ES rt femur in 4/97 at age 5 1/2 yr |
| Deb B & Mike B | mykal@charter.net | Evansville, Wisconsin parents to Ryan, 13 yr, dx ES 10/18/01, Rt side, bottom ribcage |
| Debby Russom | drussom@nycap.rr.com | Mother of Samantha R. |
| Debra Hilliard | DbrhHl@aol.com | Mother to Paul. Diagnosed May, 2001. Died Oct 21, 2002. |
| Dennis Abramsohn | DennisA@mailAPS.org | Upstate New York
Father of Joshua, 15 yr, DX 01/01 Left P femur, chemo no rad, metal prosthetic surgery 4/01) |
| Don Barnes | sutliffdon@aol.com and dbarnes@sutliff.net | Father to Cole Barnes, 14 years old from Hershey PA. Cole was diagnosed in February of 2002, with PNET in his neck behind his collar bone. He is in treatment now starting the 6th round of 14 chemos. He is receiving radiation also. |
| Mark and Aileen Lee | milf31@hotmail.com | Mother to Kyle Lee. |
| George | gnestory@yahoo.com | Northern NJ. Uncle to Mike, 16 yr, DX 1/01 ES pelvis |
| Glenn Eisenstein | GlennEise@AOL.COM | New York City
Father to Samantha |
| Heather | hearice@hotmail.com | South Carolina.
27 yr, dx 8/01, Rt. fibula. |
| Hope Ybarra | lobo2882@AOL.COM | just north of Ft. Worth , Tx. |
| Howard Spinner | HPspin@AOL.COM | Danville, CA |
| Hwan Huh | yhwanhuh@netscape.net | Father to Susan. |
| Jennifer Weinberg | jliberts@YAHOO.COM | NY, NY
31 yr., DX 8/01 Extraosseous ES; chest wall |
| Jan |
JMememurs@AOL.COM | "Gramma" Jan in Haysville, KS
(another Kansan!!) 14 yr old granddaughter recently dx with ES of pelvis and hip |
| Jenny Baker |
bakejenn@msn.com | Portland, Oregon Aunt to Brittany 15yr, dx 10/1/01 Rt hip & pelvis |
| Jenny Mackay | grassymum@hotmail.com | Australia - mom to Casey |
| Jessica Clark | clarkleroad@yahoo.com | mom to Lauren C. |
| Jill Hagler | JILLHAGLER@AOL.COM | Charlotte, NC
Mother to Josh |
| Jim Smith |
jamesshs@msn.com | Seattle, WA. 57 yr., DX 01/2001, Rt forearm, Surgery below elbow amputation 5/31/2001, clear scans thru 9/30/01 |
|
Jo Balliviero |
Mandeville, LA mom to Angie, 28 yr. |
|
| Josef Borgert |
josef@BORGERT-NET.DE | Bocholt, Germany near the Dutch border, Arnheim Dad to Jessica, 3 yr survivor of ES, recovering fr secondary MDS |
| Judie | budster@cyberlodge.com | Wichita, KS area Mom to Bud, dx 3/97, relapse 5/98, stem cell transplant 1/99, clear scans |
| Julie Mock | juliedee3@msn.com | I am a 27 yr old mother of two dx with Ewings sarcoma in my right knee so far treatment is going as planned. I have had my surgury and have 46 weeks of chemo left. I am just hoping to find some email friends out there with similar stories for help getting through the next trials of this disease. |
| Karen Blakemore | karensblakemore@aol.com | Louisville, KY - mother to Lauren
(14 now) dx 2/18/02 PNET to pelvis/bladder - surgery 2/22/02 |
| Kathryn Bergquist |
KLTB428@AOL.COM | in ________ Mom to Michael, original site right tibia; 3 yr off treatment at end of Nov. 2001). |
| Kathy |
KPritch893@AOL.COM | Rockford, IL. Mom of Jake (14)dx 2/01 with ES. Primary in sacrum with mets to skull and vertebra. http://www.caringbridge.com/il/jakepritchard/ |
| Kathy Davis |
katdavis@nc.rr.com | Fayetteville, NC Her 42 yr old brother dx 11/14/01 ES in Left buttock. She adds that he fell at work approx. 1 yr ago |
| Kayce | ktree@HOTMAIL.COM | Ohio dx 5/00 ES pelvis mets to head & lungs; finished 7/01 http:www.geocities.com/ewings sarcoma/welcome/html |
| Kim Leffingwell |
kimleffingwell@JUNO.COM | Stillwater, OK Mom to Claire, 3 yr, ES L femur, DX 6/01 , radical resection 10/30/01; treated @ Children's Hospital of OK in OKC) |
| Kim Hicks | kkhicks@ucdavis.edu | Nov 20, 2003 - I am 22 years old. I just found out I have Ewing's for the THIRD time. Can you believe it!? Student at UC Davis. |
| Leah | gregleah@ntelos.net | Mom to Ryan |
| Lenny Mingroni |
lildago@idcomm.com | Parker, CO Dad to Charlie, 24 yr, dx 6/22/01; Left clavicle |
| Lesa Mulrooney | lesamulrooney@roadrunner.nf.net | Newfoundland, Canada
wife to Michael |
| Lesa Barrett | Bcbarre2@AOL.COM | Katy, TX Has ES pelvic tumor when she was 27 |
| Lexi Chopp | smallchopp@yahoo.com | 12 years old and in remission for 6 years! |
| Liddy Shriver | shriver@cs.nyu.edu | Jersey City, New Jersey treated at Columbia and MSK diagnosised 4/4/02; tumor was in popliteal fossa of left leg (this is the space behind your knee); it surrounded the tibial nerve) |
| Linda Aleksandrowicz | lindarp@VELOCITY.NET | mom to Jon A. |
| Linda Castille | lcastille@blomand.net | Mother to Chase |
| Lindsey Nicholls | lnicholls17@aol.com | I am 17 years old and was diagnosed with ewings of the pelvis the size of a baby's head on June 14, 2001. I have been getting chemo since then and it is now the size of a thumb! I started radiation on 1/4/02. Things are going very well. |
| Liz | hippechk@aol.com | Texas |
| Lori | llgo@WEBTV.NET | Wamego, Kansas DX 1983; again in 1998; clear scans to date. |
| Louie Kanaras | Louis.Kanaras@AEC.APGEA.ARMY.MIL | Baltimore MD |
| Louise DeLaney |
ddelaney@INREACH.COM | Quincy, CA. Mom-in-law to Jonathan, 23 yr, DX 3/28/01, ES Rt femur |
| Lurleen Kippenhan | leen1993@bellsouth.net | Mother to Yvonne. |
| Marie Calvert | wcalvert@PIVOT.NET | Maine mom to Nick, 11 yrs, dx 98 PNET of chest wall, clear scans to date |
| Mark and Tracy Pimpo | mtpimpo@comcast.net | Parents to Tucker. Georgia |
| Maryann DeNobrega | mdeno@yahoo.com | daughter, April, who was dx in Dec. 96 with Ewings in the pelvic area. |
| Megan McShea | MEG254@AOL.COM | Philadelphia, PA. Age 24, dx ES 9/97; ended treatment 7/98 clear scans to date |
| Michael&Lesa Mulrooney | lesam@nfld.com | |
| Michele Alcazar | RMICHELE7@aol.com | wife to Jose. |
| Michelle Bernardo | bernardo_bell@sympatico.ca or bernardo_bell@hotmail.com | mother to Stephanie
- age 12
Canada |
| Michelle Chopp | tmchopp@EXECPC.COM | Grafton, Wisconsin. Mom to Lexi dx 10/96 with meta ES. Had chemo, surgery, radiation and stem cell rescue |
| Mike B & Deb B |
mykal@charter.net | Evansville, Wisconsin parents to Ryan, 13 yr, dx ES 10/18/01, Rt side, bottom ribcage |
| Nancy Evans | teein_off@hotmail.com or |
Fort Frances, Ontario, Canada.
mom to Paul E., 20yrs old dx March/02 PNET/rib, presently doing chemo,
surgery scheduled for Dec./02
|
| Nancy Lowery |
nalowery@dtgnet.com |
South Dakota Mom to Stephanie 15 yr dx 6/00, fibula localized |
| Nancy Janiszewski | NancyTJan@AOL.COM | Avon, CT mom to Matthew, dx 10/98 Left femur |
| Nancy R |
nrienzo@JUNO.COM | Coral Springs, Florida
Mom to Matt, 17 yr, DX Estraosseous ES 12/00 L calf muscle |
| Norma Brown |
ntbrown@highstream.net | Address: 19070 Halifax Rd. Carson, Virginia 23830 PH - 434-246-2124 Mom to Charlie, 25 yr, dx 6/22/01; left clavicle, finished treatment 4/02 - clear scans since |
| Pauline Rothwell | PAROPTION@AOL.COM | England
Mother-in-law to Jamie |
| Pedro | pedroandreo@YAHOO.ES |
Esperanza's uncle |
| Penny Keating |
silver@TX3.COM | 40 mi SE of Seattle WT. mom to Tim, 23, dx 8/00 Rt distal femur |
| Rachel Tyczinski | rachel@TWP.PRINCE.ON.CA | Sault Ste. Marie, Ontario, Canada.
Mom to Kyle, DX 3/99 at 12 yr, Left femur, resection 6/99; relapsed 8/00. "Gone to snowmachine and dirt bike with the angels- June 1, 2001") |
| Ramona Davis | ramonak@directcon.net |
Mom
to Kenny,
dx |
| Randy Holbrook |
Gidian1997@AOL.COM | Florida Panhandle Father to Gidian dx ES 5/31/01; Husband of Ronda dx BC 10/24/01 |
| Rebekka Delk | momsbbq@aol.com | |
| Rita Hine | rlhnorton@HOTMAIL.COM | Barberton, Ohio Gramma to Kayla (2 yr) DX 5-01,ES femur. |
| Ronda and Randy Holbrook | Gidian@mchsi.com | parents to Gidian |
| Samantha Kazarinov-Hawk |
musical.infants@TALK21.COM |
Middlesex HA3, 7HG Mother to Gordon, 17.02.87 -
01.05.01. Dx 01/00 ES in pelvis, received EISESS protocol with ifosfomide,
then radiotherapy. Relapsed 1/01, |
| Samantha Russom | brat98@nycap.rr.com
or
aim screen name = sparkalingangel9
|
Age 13 (and Norma says she is a real cutie!)
daughter of Debby Russom |
| Sandy Glaspell | sandyg@carolina.rr.com | Mom to Shelly Glaspell Schiellerd. She has an ES fund web site... |
| Sandy & Bill |
sschuma@AOL.COM | Madison, Wisconsin Parents to Sarah 7-1-77 to 12-11-99 |
| Sasha | sasha@millwater1936.fsnet.co.uk | Mother to Danny |
| Steve and Cynthia Crowley | steve.crowley@oberlin.edu | Parents to Olivia |
| Stephanie Bernardo | coolis_4@hotmail.com | Age 12 (and Norma says she is a real cutie!)
She welcomes any email from others with ES. Canada |
| Sue Roach | saroach@HOTMAIL.COM | Sturgis, Michigan |
| Susi Lawless | slaw401@hotmail.com | mother to Superboy Brad |
| Theresa | mktheresa@aol.com | Danville, CA
Mom to Dan, 29 |
| Tanya Segi | swiss_army_wife@hotmail.com | Sister of Tracy |
| Teresa Smith | Tersmi594@AOL.COM | Salem, OR. Mom to Logan, 5 yrs, DX 3/30/01, Rt femur |
| Terrie | Tsiv2@aol.com | mother to Andrea |
| Tina Komoroske | TATK2@AOL.com | Simsbury, CT (a 70's KU Jawhawk!) mom to Nick,17 yr: dx 5/14/98 at age 14 yr; finished chemo 4/99, clear scans to date |
| Tracy and Mark Pimpo | mtpimpo@eagnet.com | Parents to Tucker. Georgia |
| Tricia Jeffs | TobJeffs@AOL.COM | Alpharetta, GA dtr, Bridget dx 2/3/97 |
| Truus Vanderspek | truusvanderspek@hotmail.com. | Netherlands
mom to Paul O. Paul's web site is: |
| Valerie Farris | pfarris1@SAN.RR.COM | San Diego, CA DX 01/26/00 at 52 yr w/ ES of R distal femur & lung mets |
| Veronica Bailey | MURRAY3910@AOL.COM | in Las Vegas, Nevada Mom of Jonathan dx PNET 6/19/01 |
| Wendy Hansen | whanse1@hotmail.com.au | mother to Sinclair |
| William Johnson | wjohnston@neo.rr.com | Akron Ohio - father to Clayton (ES of femur) |
| Y. Hwan Huh | yhwanhuh@hotmail.com | Seoul, Korea Dad to Suhrhim "Susan" Lee, 25 yr. 07/1994 dx when she was junior in Simsbury High, Simsbury, CT PNET right elbow, treated at MSKCC, chemo, resection and brachytherapy by Dr. Casper and Dr. Brennan 02/1996 local recurrence when she was freshman in college in Korea surgery, brachytherapy and external beam radiation at MSKCC no chemo 07/1997 lung mets, 4 lesions in both lungs resection by Dr. Bains of MSKCC and chemo by Dr. Rosen of St. Vincent's 05/1995 question of recurrence raised by her physician in Korea seen by Dr. Rosen who thought no recurrence, returned feeling well 03/1999 she noted increase in size of mass in her right elbow 02/2000 local recurrence, dx by her pysician in Korea, came to New York to see Dr. Meyers, amputation recommanded but total right elbow replacement performed by Dr. Athnasian at MSKCC 03/2001 married to one good man who's been a good friend since freshman year 04/2001 moved to NJ area and recovering well and enjoying newly married life |
