History

Tuesday, August 21, 2007 10:17 PM CDT

Margo Roxanne Ham
April 7, 1980 - April 20, 2007

Linda Ham's daughter Margo had a SEGA that they treated first with rapamycin to shrink the tumor, and then waited a few weeks and then she had surgery. She had complications from the surgery and was unconcious for quite a while before she died. I know that Linda and her sister and father were by her side at the end, and that she died peacefully.

Adrianne Cohen's daughter, Ronda, just died a couple of weeks ago. She had been diagnosed with LAM in January, as well as having a abdominal mass. She was very ill in the first couple of months of 2007, and just never recovered. She also died peacefully with Adrianne and her stepsister, Julia, at her side.

Linda was the second Executive Director of the then National Tuberous Sclerosis Association while it was located in Winfield, Illinois (now the TS Alliance) and Adrianne was the first Executive Director in California where the organization began and one of the 4 founding moms.

It is very hard for me to process loosing these two wonderful, inspirational young girls to the complications of TSC, as I had the honor and pleasure of watching Margo grow up, and of meeting and working closely with and knowing well both Linda for many years and later Adrianne when she rejoined the Board of Directors, as well.

See:

http://www.chicagosuburbannews.com:80/westchicago/obituaries/x647177332

http://www.legacy.com/DailyHerald/Obituaries.asp?Page=LifeStory&PersonId=87614732

Please sign Margo Ham's guest book at:

http://www.legacy.com/DailyHerald/GB/GuestbookEntry.aspx?&PersonID=87614732

There are photos of both Margo and Ronda at younger ages in the video at:
www.caringbridge.org/nc/tuberoussclerosis

My deepest sympathy goes out to both Linda and Adrianne's families.

If any of you need more information to send a card or want to do something as a group, feel free to contact me.

Debbie

Mom to Christopher 31 on August 28th, the JOY of my life with TSC and seizure free for 21 years (KNOCK WOOD!), Patrick 25, working as a Systems Specialist at UNC at Chapel Hill (aka Carolina) and going to graduate school at NCSU AND finally married to Meredith after 7 years, and Laura 16, just a beautiful ditzy blonde teenager who loves cheerleading and giving her parents heart failure with her driver's license and wife of Rex Murphy for 33 years.
****************************************************
Debbie Fields Murphy, Volunteer Executive Director
NTSA Board Member 1985 - 1994
NC Tuberous Sclerosis Assn., Inc.
1005 Indianhead Circle
Snow Hill, NC 28580
800-622-6872 (NC Only)
252-747-2786 or 8592
Cell: 252-714-5063
For Spanish Dial 711 for NC Relay
************************************
www.nctsf.org
www.caringbridge.org/nc/tuberoussclerosis
http://health.groups.yahoo.com/group/TuberousSclerosisChatRoom
www.freewebs.com/whaleysangels/tscvideos.htm
www.yellowpagesforkids.com/help/nc.htm
www.familyvillage.wisc.edu/Comm/Northcarolina.html
www.fsnnc.org
www.storiesoftsc.com
www.tsalliance.org

Debbie.Murphy@nctsf.org
OR
NCNTSA@embarqmail.com
OR
TuberousSclerosis@embarqmail.com

"Never doubt that a small group of committed people can change the world. Indeed they are the only thing that ever has." -Margaret Mead
**************************
HELP FIGHT TSC
Use:
www.goodsearch.com
supporting
NCTS
when searching the web!
*************************************
The wedding pictures are up!

http://picasaweb.google.com/pgmurphy75

Tuesday, August 21, 2007 10:17 PM CDT

Monday, April 23, 2007 5:32 PM EDT

North Carolina Tuberous Sclerosis Association, Inc.

SUPPORT GROUP MEETING PHOTOS!

If you have an email address you check regularly, please give it to Debbie ASAP to save on postage and printing costs in the future.

Also, if you prefer NOT to receive support group meeting notices, please let Debbie know!

Debbie Fields Murphy

at 1-800-622-6872 (NC Only)
or
252-747-2786 or 8592

or by email to:

NCNTSA@embarqmail.com

or
TUBEROUSSCLEROSIS@embarqmail.com

or
Debbie.Murphy@nctsf.org

Debbie

Mom to Christopher 30, the JOY of my life with TSC and seizure free for 21 years (KNOCK WOOD!), Patrick 24, a genius engineer working at NC State University and going to graduate school AND finally marrying Meredith after 7 years on June 2nd, and Laura 16, just a beautiful blonde teenager who loves cheerleading and giving her parents heart failure with her driver's license and wife of Rex Murphy for 33 years

****************************************************
Debbie Fields Murphy, Executive Director
NC Tuberous Sclerosis Assn., Inc.
1005 Indianhead Circle
Snow Hill, NC 28580
800-622-6872 (NC Only)
252-747-2786 or 8592
Cell: 252-714-5063
For Spanish Dial 711 for NC Relay
************************************
www.nctsf.org
www.caringbridge.org/nc/tuberoussclerosis
http://health.groups.yahoo.com/group/TuberousSclerosisChatRoom
www.freewebs.com/whaleysangels/tscvideos.htm
www.yellowpagesforkids.com/help/nc.htm
www.familyvillage.wisc.edu/Comm/Northcarolina.html
www.fsnnc.org
www.storiesoftsc.com
www.tsalliance.org

debbie.murphy@nctsf.org
OR
NCNTSA@@embarqmail.com
OR
TuberousSclerosis@embarqmail.com

"Never doubt that a small group of committed people can change the world. Indeed they are the only thing that ever has." -Margaret Mead
**************************
HELP FIGHT TSC
Use:
www.goodsearch.com
supporting
NCTS
when searching the web!
*************************************

Tuesday, October 17, 2006 11:27 PM CDT

North Carolina Tuberous Sclerosis Association, Inc.

Support Group Meeting

Saturday, October 28, 2006

1 p.m. until

ROWAN PUBLIC LIBRARY
http://www.rowanpubliclibrary.org/amain/library_info.html

Stanback Room

201 W Fisher St.

Salisbury, NC 28145

Phone: 704-216-8234

Speaker: Raymond S. Kandt, MD

http://www.johnsonneurological.com/kandt.html

TSC Specialist, Researcher and Member of the TS Alliance Professional Advisory Board

Please bring a covered Dish!

Children are always WELCOME!

CLICK HERE FOR DIRECTIONS!

CLICK HERE FOR MAP!

PLEASE RSVP before October 28th

to Debbie Fields Murphy

at 1-800-622-6872 (NC Only)
or
252-747-2786 or 8592

or by email to:
NCNTSA@earthlink.net

or
Debbie.Murphy@nctsf.org

Look Forward To Seeing All of YOU there!

If you have an email address you check regularly, please give it to Debbie ASAP to save on postage and printing costs in the future.

Also, if you prefer NOT to receive support group meeting notices, please let Debbie know!

Monday, October 31, 2005
North Carolina Tuberous Sclerosis Support Group Meeting

Saturday, November 5, 2005

1 pm until

Salisbury J.F. HURLEY Family (NEW) YMCA

Board Room

828 Jake Alexander Blvd West, Salisbury, NC 28147
Telephone: (704) 636-0111

Speaker: E. Steve Roach, MD

Professor of Neurology and Director of the Comprehensive Epilepsy Program at Wake Forest University School of Medicine/Baptist Hospital
Winston-Salem, NC

TSC Specialist and Member of the TS Alliance Professional Advisory Board

Please bring a covered Dish! Children are WELCOME!

Directions:
From Charlotte and south of Salisbury:
Take I-85 N toward GREENSBORO EXIT: Take the US-601/JAKE ALEXANDER BLVD exit- EXIT 75- toward ROWAN-CABARRUS COMMUNITY COLLEGE NORTH CAMPUS. Turn LEFT onto US-601/JAKE ALEXANDER BLVD S. End at 828 Jake Alexander Blvd West Salisbury, NC 28147-1220

From High Point, Raleigh/Durham and north of Salisbury:
Take I-85 S toward CHARLOTTE EXIT: Take the US-601/JAKE ALEXANDER BLVD exit- EXIT 75- toward ROWAN-CABARRUS COMMUNITY COLLEGE NORTH CAMPUS. Turn RIGHT onto US-601/JAKE ALEXANDER BLVD S. End at 828 Jake Alexander Blvd West Salisbury, NC 28147-1220

PLEASE RSVP by Nov 4th to Debbie Fields Murphy:

Toll Free: (800) 622-6872 (NC Only) 252-747-2786 or 8592
or by email: NCNTSA@earthlink.net or TuberousSclerosis@earthlink.net

or Barbara Rippy
(704) 289-5912 (home) (704) 219-9768 (cell)

We Look Forward To Seeing YOU there!

Note: take a look at this video on http://www.treasurestreet.com/tuberoussclerosis.cfm

Watch the "Lighting the Way" video

Dr. Roach is in it and he founded the Dallas TSC Clinic after leaving Wake Forest in early 1989. We sent him off with a Texas Stetson Hat as a going away gift! He wrote me this hand written note after his last support group meeting in NC....

"11-14-1988

Debbie,

Many thanks to you and your members for your help and kindness over the years. Thanks also for the lovely new hat, which I love. It will stimulate me to work very hard after I move, lest I be accused of fitting the old Texas expression 'Big Hat, No Cattle.'

You have done well in a short time. I was quite serious at the meeting, when I said I had learned more from your members than they have from me. Keep in touch.

Best Wishes,

Steve Roach"

Well he kept that promise to put it mildly! As those of you who have been around a long time know, Dr. Roach started his TSC research right here in NC with the help and support of our group and is now considered the next Dr. Gomez!

Thank goodness he is back here with us in NC!

If you haven't RSVP'ed please do so by Friday, Nov 4th and let me know what you'll be bringing so we have everything we need. For those of you who have called Barbara Rippy all ready, I still need to hear from you as Barbara has lost all the names except 2!

We will also be asking each of you to begin thinking about whether or not you wish to become a local TS Alliance controlled by the national organization, stay as we are now as a separate non profit organization and/or perhaps start to raise money as Treasure Street does, so we have a world class TSC clinic right here in NC with Dr. Roach at the helm!

We need each of you to step up to the plate, to volunteer, raise awareness, do some fundraising, make donations, etc., which ever course you eventually choose to follow. Its up to all of you as a group to decide where we go in the future!

Barbara and I will always be available as a resource for you whatever choice you make!

As ALWAYS your children are more than welcome to attend! If you don't bring them, please bring pictures!!!

I'm really looking forward to seeing all of you on Saturday!

Debbie

****************************************************
Debbie Fields Murphy, Volunteer Executive Director
NC Tuberous Sclerosis Assn., Inc.
1005 Indianhead Circle
Snow Hill, NC 28580
800-622-6872 (NC only)
252-747-2786 or 8592
Cell: 252-714-5063
NCNTSA@earthlink.net
OR
TuberousSclerosis@earthlink.net

"Never doubt that a small group of committed people can change the world.
Indeed they are the only thing that ever has". -Margaret Mead

Check Out The Tuberous Sclerosis Chat Room at:
http://health.groups.yahoo.com/group/debbifmurphy/

Learn more about Tuberous Sclerosis at:
http://www.tsalliance.org/

Watch Tuberous Sclerosis Videos at:
http://www3.caringbridge.org/nc/tuberoussclerosis/
http://www.angelfire.com/magic2/faces_of_tsc/
http://www.angelfire.com/magic2/tsc/

Find help and support in NC at:
http://www.yellowpagesforkids.com/help/nc.htm

Get online support for all kinds of diseases at:
http://groups.msn.com/OliviasGrace/

Visit this memorial site to my best friends daughter at:
http://www3.caringbridge.org/nc/catherine_nicole/
****************************************************

Friday, June 17, 2005 1:18 AM
The support group meeting went wonderful, as usual. We had over 50 people in attendance which is just great for a beautiful Saturday in June! Two families came up from South Carolina! 15 TSC families from NC were there!

Ray Kandt as always did a great job as speaker and answering questions! He gave everyone a handout of the chapter he wrote on Tuberous Sclerosis for the new book "Treatment of Pediatric Neurological Disorders" 2005.

The group is just as motivated as ever, if not more so! The only down thing at all is the usual problem---there just NEVER seems to be enough time to spend with everyone! We'll be meeting again in September and November. Steve Roach has agreed to speak on November 5th and Ray will probably come back again in September since there were so many people there that still had questions that he didn't have time to answer them all and there were so many families that wanted to attend and couldn't on June 11th, but will be there in September.

We have one great group of people here!

May 17, 2005 2:42 PM

North Carolina Tuberous Sclerosis Support Group Meeting

Saturday, June 11, 2005

1 pm until

Salisbury J.F. HURLEY Family (NEW) YMCA

Board Room

828 Jake Alexander Blvd West, Salisbury, NC 28147
Telephone: (704) 636-0111

Speaker: Raymond S. Kandt, MD

TSC Specialist and Member TS Alliance Professional Advisory Board

Please bring a covered Dish! Children are WELCOME!

Directions:
From Charlotte and south of Salisbury:
Take I-85 N toward GREENSBORO EXIT: Take the US-601/JAKE ALEXANDER BLVD exit- EXIT 75- toward ROWAN-CABARRUS COMMUNITY COLLEGE NORTH CAMPUS. Turn LEFT onto US-601/JAKE ALEXANDER BLVD S. End at 828 Jake Alexander Blvd West Salisbury, NC 28147-1220

From High Point, Raleigh/Durham and north of Salisbury:
Take I-85 S toward CHARLOTTE EXIT: Take the US-601/JAKE ALEXANDER BLVD exit- EXIT 75- toward ROWAN-CABARRUS COMMUNITY COLLEGE NORTH CAMPUS. Turn RIGHT onto US-601/JAKE ALEXANDER BLVD S. End at 828 Jake Alexander Blvd West Salisbury, NC 28147-1220

PLEASE RSVP by June 10th to Debbie Fields Murphy
(800) 622-6872 (NC Only) 252-747-2786 or 8592
or by email: NCNTSA@earthlink.net or TuberousSclerosis@earthlink.net

Look Forward To Seeing All of YOU there!

Click here to go back to the main page.
----End of History----