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  #76  
Old Sat Oct 1, 2011, 12:54 PM
Bob Macfarlane Bob Macfarlane is offline
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One last chance


Don't lose all hope. We do have one last chance. Over this weekend I will be writing a letter to the "Veterans for Common Sense" and explaining to them what has occurred. My doing anything further through the VA would be like throwing "pearls before swine."

This time the report from the IOM was neither moral nor ethical - - - it looks like it was strictly a financial decision and most likely driven by input from the VA and this administration.

In the small book I am writing

"Delay You, Lie to Deny You and Wait for You to die - - -
What Audacity Veterans Must Have to Hope!"

I am just fleshing out the chapter on "Decisions in the Sunshine" about the secrecy and lack of transparency behind the IOM decision making process. They did not confer with a single one of our experts. Decision in a vacuum but it is a large report full of minutia needed to justify the wasting of your tax money. Not a single new presumptive disease for two years work.

I certainly encourage everyone to continue your fight until you get a definitive decision from the Board of Veterans Appeals. As you continue, I will be here to help you in any way I might. From the MDS claims heard before the BVA 25 have been approved and 41 denied and the rest were remanded back to the region.

Strange anomaly has occurred. There has historically been one of more BVA decisions on MDS concerning Agent Orange every month. Since September 1, 2010, there have only been three, one nay and two yeas. The decisions lag behind getting posted but they are current through July 2011.

There are a huge number of MDS / AML cases being treated by the VA for Vietnam Era veterans that have never been before the BVA. I believe I have said this before - - - I believe those cases were resolved at the region in favor of the veteran. Wrote to the VA Inspector General’s office yesterday to ask them to look into why my Freedom of Information Act request that could be used to prove that is being stonewalled by the Regional Offices.

To answer your concerns - - - I have not given up.

I will be asking “Veterans for Common Sense” to consider suing Veterans’ Affairs in federal court on behalf of our class of veterans - - - those with bone marrow failure diseases. If they will take it on, all of their work is done pro bono.

http://www.veteransforcommonsense.org/


Never kick a tiger in the ass without first having worked out a real good plan for the teeth.
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  #77  
Old Sat Oct 1, 2011, 03:45 PM
mausmish mausmish is offline
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Bob, I'm shocked and saddened by your news. You've fought so long and hard.
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Karen, age 60, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #78  
Old Tue Oct 4, 2011, 10:52 PM
Bob Macfarlane Bob Macfarlane is offline
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Oh well!

Good late evening folks,

It seems like I never get to go to bed at a normal time. You guys certainly cost me a lot of sleep and trust me, I need the beauty rest.

As I have always promised you guys, I'll keep you posted at every turn. Just please don't read too much into this, but . . .

I just got off of a lengthy telephone conversation with Bob Handy, Chairman, Veterans United for Truth, in California.

He said that VUFT attorney's had said they didn't really want to take on another case BUT he was so interested in what our letter said, that he was emailing a copy to the attorney's tonight. He didn't want to wait until the morning.

You can read about the VUFT at and join them (it is free)

http://www.veteransunitedfortruth.org/

be sure to check out who is on their Board of Advisors!

I have always said that God is still in the miracle business! When He closes one door, He always opens another. If you want to walk on water, you need to take a chance and get out of the boat.

Special thanks to Larry Schuh for suggesting we contact these folks. Dinner is on me next time sir. Let me know your west coast of Florida schedule.

Looks like I might have to add a few chapters to the book!
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  #79  
Old Sat Oct 29, 2011, 11:20 AM
Bob Macfarlane Bob Macfarlane is offline
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Fat woman ain't sung...


http://www.youtube.com/watch?v=r26_C...eature=related always brings tears to my eyes.

My best guess is that we are going to see nothing out of Veterans United for the Truth. Bob Handy has told me on several occasions that I should contact the ACLU to see if we can generate interest there. Bob has also suggested contacting a number of law schools to see if they will take this on as a class project.

It is not that the VUFT doesn't want to help but the pro bono group that they work with put $7 million into the fight for PTSD. That group did not accept a single penny when it was initially settled and is now fighting the VA's rebuttal.

Bob also has not given me a definitive NO either. The lead attorney for the pro bono group has mesothelioma and has been out sick for some time now.

The group Veterans for Common Sense in Washington, DC has never acknowledged my request for assistance from them.

I was so discouraged with the IOM ruling that I have really done nothing since but that will be changing over the next few weeks. Someone will pick this up because we are right and the IOM decision contains no science. It was strictly a financial decision most likely driven by this administration.

The only reference to MDS / AML in the IOM report indicates that studies of these diseases have only been undertaken recently and there is no proof within the Veterans Affairs Office of a linkage between Agent Orange and our diseases. Talk about sleeping with the enemy?

http://books.nap.edu/openbook.php?re...13166&page=416 (bottom)
http://books.nap.edu/openbook.php?re...13166&page=417 (top)

Yet we proved them with Dr. Timothy Aliff’s Nexus Letter with references to twenty one scientific studies going back to 1994. They apparently did not care to look at anything other than what they received from the VA. They could not allow facts to get in the way of what they wanted to prove. That we are 14,000% more likely as a group to have the diseases meant nothing to them.

There have been over 8,000 views of this thread. Surely, one of you must have a contact within the ACLU or a law school? I am willing to travel at my expense to present our case in front of one or more of them. I need your help.

Dr. Mikkael Seekeres told me once that Aranesp would not last forever in keeping up my red count. Soon I am afraid I shall have to find out what else they have in their magic box of tricks.
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  #80  
Old Wed Nov 23, 2011, 06:20 PM
Bob Macfarlane Bob Macfarlane is offline
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Iron

My turn to ask the question. I believe that today is the first time in all of my years with MDS that anyone has mentioned ferritin. My counts with this weeks test were 765 plasma and 85 serum.

Be concerned? If so why?
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  #81  
Old Thu Nov 24, 2011, 11:37 AM
Lbrown Lbrown is offline
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My drs are not concerned with ferritin under 1000. With exjade, mine hovers around 1300. The goal is 1000, but it never seems to happen.

Deb
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  #82  
Old Thu Dec 15, 2011, 06:04 AM
Bob Macfarlane Bob Macfarlane is offline
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Contact

Recently a couple of users have had a problem contacting me at AirAmrka@aol.com - - - that has been my email address since 1990 and I have no blocks on it. If you experience problems, check with your provider. You may also call me on my cell at 954-232-7190. I spend a lot of time in the woods hunting, so if you don't get an answer please leave a message.
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  #83  
Old Sat Jan 14, 2012, 01:35 PM
triumphe64 triumphe64 is offline
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List of diseases linked to Agent Orange exposure grows

It looks like MDS hasn't made the cut yet.

http://www.dallasnews.com/news/local...ion=reregister
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Dallas, Texas - Age 71 - Pure Red Cell Aplasia since March 2005 - Tried IVIG - Then cyclosporine and prednisone in ever changing combinations. Now cyclosporine, Danazol, and prednisone.
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  #84  
Old Wed Jun 20, 2012, 10:15 PM
newfintexas newfintexas is offline
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New Diagnosis

Hi Bob ..my husband 56 was just diagnoses with mds...we are still waiting for the results of chomosome and another bone marrow biopsy result to know for sure the stage, score. He didn't serve in nam but was in the bomb dumps during that time as well as in the early 80s and has talked about handling the "outdated" bombs etc. They didn't have masks or special gear, just men with bare hands checking to see if the bombs were still secure, dust etc that spewed out coated them etc. Have you ever heard of any of this type of contact causing mds? We are just searching for a reason - maybe to be able to fight it or maybe just to keep our sanity.

Thanks for any input you or anyone else out there might have.
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  #85  
Old Thu Jun 21, 2012, 03:55 PM
Florida Gal Florida Gal is offline
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Keep up the Fight

Bob, Thanks to you and all the other veterans for helping vets.

My deceased USAF spouse believed there were AO toxins and others stored at Clark AFP in the Phillipines in 1961-1963. He believed he was exposed there as well as in Vietnam and Thailand. He was approved by the VA for AO related benefits for diabetes and heart disease.

Our son, born at Clark AFB , beleives his many health related issues are related to AO exposure.

I have MDS, RCMD-RS with serious neutropenia.

Veterans,and some of their dependents, have illnesses related to AO which
need to be recognized and treated.
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79/F dx MDS-RA 07/07, dx RCMD 03/09 ,
dx RAEB-1 04/13 /,failed VIDAZA 4/13, dx RAEB-2 06/19, RX Aranesp
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  #86  
Old Fri Jun 29, 2012, 10:32 PM
milliken2 milliken2 is offline
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Not able to send email

Bob;

Just wanted to let you know that I tried to email you with the information we discussed today - and it came back to me - saying that you were only accepting mail for certain addresses. Let's try to go in the back door - you email me - and I will reply - our email address is as follows:

millikenhouse@verizon.net

Thanks,
Beth
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Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS. and I can't help the one I love the most.
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  #87  
Old Fri Jul 13, 2012, 12:29 PM
Florida Gal Florida Gal is offline
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Agent Orange MDS

Bob,

As a military widow, I want to say thanks to you and all those fighting for veterans and remembering their survivors.

My USAF spouse died from Agent Orange related diabetes and coronary heart disease which were both compensated by the VA.

He was exposed to Agent Orange at Clark AFB in the Phillipines, Vietnam and Thailand.

His family was with him at Clark . I have MDS. One son, born at Clark, has serous helath problems, and the other son is getting disabiity benefits at an early age.

I pray that you receive the health care and compensation that you deserve.

Florida Gal
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79/F dx MDS-RA 07/07, dx RCMD 03/09 ,
dx RAEB-1 04/13 /,failed VIDAZA 4/13, dx RAEB-2 06/19, RX Aranesp
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  #88  
Old Fri Aug 24, 2012, 03:58 PM
Don J Don J is offline
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Wink Don Johnson

I was diagnosed with MDS by the VA system 2 years ago, although i was not in Vietnam, i ruin a military gasoline station in Panama Canal Zone in l949 thru l951, and gasoline figures in MDS problems,.
Have filed a claim thru the VA just awaiting an answer, hopefully its a good one.
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  #89  
Old Sat Aug 25, 2012, 02:39 PM
cathybee1 cathybee1 is offline
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To Don Johnson

My husband Bruce serviced planes in Thule, Greenland for the Air Force in the early 50's, and said sometimes he would be drenched in jet fuel. He believes that was the origin of his MDS.
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Catherine, wife of Bruce age 73; diagnosed 6/10 with Int 1 MDS: diagnosis revised 9/10 to macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. 2 courses of Aranesp were unsuccessful. Dx as copper deficient. Transfusions ~ 1 months.
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  #90  
Old Sat Aug 25, 2012, 03:19 PM
Chirley Chirley is offline
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I don't know if I'm supposed to do this, but here goes.

This is from an Australian Government website.

The following is a list of conditions for which compensation can be claimed under subsection 7(2) of the SRCA. *Conditions on the list were identified by a Doctor’s Advisory Committee as being related to F-111 deseal/reseal service, based on consideration of the results of the Study of Health Outcomes in Aircraft Maintenance Personnel (SHOAMP).
*
However, while the SHOAMP found an ‘association’ between F-111 work and the following conditions, this is not the same as saying that the work directly caused the condition.* (An ‘association’ is a weaker standard than a direct causative factor).* You may therefore find that your medical practitioner may have a differing view about causative factors.
*
The Military Rehabilitation and Compensation Commission invoked SRCA 7 (2) for the following conditions for F-111 deseal/reseal and other F-111 fuel tank maintenance personnel:
*
·****** Acquired colour vision deficiency
·****** Agoraphobia with panic disorder
·****** Anxiety
·****** Bi-polar affective disorder
·****** Bowel polyps
·****** Cauda equina syndrome
·****** Depression
·****** Diverticulitis
·****** Dysplastic naevus
·****** Eczema/dermatitis
·****** Erectile dysfunction
·****** Impaired cognition
·****** Irritable bowel disorder
·****** Liver disease
·****** Malignant neoplasms (ie, various forms of cancer)
·****** Memory loss
·****** Mixed connective tissue disease
·****** Myeloproliferative disorders
·****** Multiple sclerosis
·****** Neurogenic bladder
·****** Non-alcoholic toxic encephalopathy
·****** Pancreatic disease
·****** Panic disorders
·****** Parkinson’s disease
·****** Peripheral neuropathy
·****** Sarcoidosis
·****** Sleep disorders with neurological basis
·****** Systemic lupus erythematosus (SLE)
·****** Spinal muscular atrophy
·****** Ulcerative colitis/Crohn’s disease
·****** Vertigo
*
Invoking the SRCA subsection 7 (2) provisions for the above conditions means easier access to compensation for F-111 personnel.* But when making a claim for any of these conditions, please remember to include any medical evidence you have of a medical diagnosis.
*
For diagnostic purposes, International Classification of Disease (ICD) codes are used for the above conditions. This means that, if you are diagnosed with a condition above, it must meet the ICD code ascribed by the Doctor’s Advisory Committee for that condition.*
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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  #91  
Old Sat Aug 25, 2012, 07:29 PM
dave stewart dave stewart is offline
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dx in 2010 with mds and bilateral nuerop

I was in 1st recon from mar 67 thru feb 68, with 18 combat missions.
Many of the areas I was in was defoliated. I was totally healthy until 2009. when I had an accident, and a blood test showed abnormal red blood cells, I didn't have a bone marrow test until mid 2010 when I started having pain when I walked.

I had not been to a doctor for the prior 20 years, (I had no reason), great diet and exercise program.

So here is one more vietnam vet with mds.
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  #92  
Old Sun Aug 26, 2012, 11:35 AM
milliken2 milliken2 is offline
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Dave;
It is my husband who has the MDS - and is also a Viet Nam Vet. Did you file a claim with the V.A.? The more claims they get - then possibly they will listen. We filed at least 2 months ago, and haven't heard a thing - neither positive or negative. Good luck to you. I am just afraid that if they ever do decide in a positive fashion, Earl won't be alive to get any benefits from it, as he continues to get weaker and weaker by the day.

Good Luck to you.

Beth
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Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS. and I can't help the one I love the most.
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  #93  
Old Thu Oct 18, 2012, 04:32 PM
gramous gramous is offline
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article mds and orange agent

Hi everyone,

just posted on mds beacon....

http://www.mdsbeacon.com/news/2012/1...tic-syndromes/

a good day for everyone, béné
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béné- boyfriend with RARS-T dx 11/02- hemo 8,9 (april13), now 12,0 wbc 4200(april13) now 2900 platelets 2200000 (april 13), now 317000- ferritine 650 ....watch and wait mode. Hydrea 1/d for platelets management.
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  #94  
Old Sun Oct 21, 2012, 02:14 PM
dave stewart dave stewart is offline
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va disabilty status

I filed with the va effective june 6 2011.

I just called and they said my file went to descision august 8 and I should have a deicision in 90 days.

I am not on any drug program, but starting sept 14 I am using the following.

Vitamin k2(mk4) 45 mg per day
IP-6 2.5 grams per day
Shark liver oil 6 500mg per day.
AHCC 4-500mg per day.
Since I have been on this program my wbc count is twice normal, but I
am still getting transfusions for my rbc and hemo counts. Only time will tell.
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  #95  
Old Tue Jul 23, 2013, 11:51 PM
Keri Anne Keri Anne is offline
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Lost V. Vet Husband to MDS

Does anyone have info for a widow who has promised her husband that she would fight for him and his fellow brothers. I have made this my fulltime job. Please email me with any info or suggestions to keri@emzkreations.com. I WANT TO HELP!!!
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Keri Anne, widow of Tom W. age 63; dx Myelodysplastic Syndrome 10/26/11; Rec. Aloe at Audie Murphy SA, TX 5/12; passed 10/23/12;.
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  #96  
Old Wed Jul 24, 2013, 10:11 AM
barbara a barbara a is offline
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New To Mds Forum And Am Requesting Assistance

Hello to everyone I am a widow of a Viet Vet who passed away 2003 from MDS. We presented a claim to the VA in 2001 and were denied, I have presented a second claim about 6 months ago and again have been denied..I intend on fighting the denial with diligence and tenacity. I do not wish to recreate the wheel and from the foum's comments it appears many of you have detailed research supporting our Vets with MDS to present claims, I would greatly appreciate any data any of you may give to me or direct me to. I am inspired by Bob Marfarlane to continue my battle on behalf of my husband and all Vets. Is there a registry of Vets with MDS?
I have asked my Senator to investigate what it takes to get a code developed for MDS and will share that and all data I collect. THANK YOU EACH for remaining active, interested and persistent! Wit each other we will make a positive result!
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  #97  
Old Thu Jul 25, 2013, 12:51 AM
Neil Cuadra Neil Cuadra is offline
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barbara a,

In addition to those you are already contacting, be sure to talk to the AA&MDSIF and the MDS Foundation. Leave no stone unturned!

You might also want to connect with the Asheville / Hendersonville North Carolina Community of Hope.
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  #98  
Old Fri Jul 26, 2013, 02:06 PM
triumphe64 triumphe64 is offline
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You might also contact Congresswoman Doris Matsui who has a special interest in this area.

http://forcechange.com/29078/increas...lure-diseases/
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  #99  
Old Sat Jul 27, 2013, 03:34 PM
2mm 2mm is offline
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VA claims

Hi Barbara:

I am also a widow of Vietnam vet, deceased Sept. 2009 from "malignant pleural effusion, chronic myelomonocytic leukemia". That was the cause of death written on the Death Certificate; my husband's final diagnosis in the progression from MDS through 6 years of his struggle. I have been denied three times on my claims since my husband passed.

I also prepared my petition, which Bob Macfarlane presented when he was our spokesman to the IOM evaluation in 2011. He is a valiant warrior for the cause. I marvel at his stamina and will power to continue this battle.

I have not presented another claim at this time because of the pressure on the under staffed reviewers of the VA, and the high number of claims from the returning vets from Iraq and Afghanistan. They are so backlogged that I am sure the MDS related claims are denied immediately because the VA does not recognize the illness and has no desire to do so. It's a quick move from one side of the desk to the outbox.

I have my files, and may resubmit in the future, but I'm not sure. It is so hard to relive all the pain associated with the history when you work with the paperwork, and my recovery time gets longer each time I re-submit.

I wish you luck with your claims.

Lillian
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  #100  
Old Sun Dec 8, 2013, 09:15 PM
simplyamom simplyamom is offline
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Does anyone out there have any information that would help me??!! Thank you.






Quote:
Originally Posted by simplyamom View Post
Hello Bob, I found you on another web site and I am seeking any help that you can give me , please. My son was born in 1976 with trisomy 8 syndrome. I have recently been reading that there might be a link to his dad serving in Vietnam, 1968-1970 where he was exposed to AO. Our son has so many serious health problems,if AO is the reason for his suffering , I need to bring a case against the goverment on behalf of my son. Do you know if there is a class action open?
Any help will be appreciated. Respectfully yours.
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