The Adenoid Cystic Carcinoma Foundation, International
Newsletter
March 1, 1999
Hello all,
OK lets get right to it. Some new and some old.
We have been told by NORD that when our goal is reached, we will be able to have one of us ACCers there. To help in the selection of which researchers receive the grant. This group is called the Physician Selection Board.
I think that this is good news. I was thinking maybe Steve Lucas or Mike from California would be good for this. We will work on this one as soon as our goal is reached. Remember when donations are sent in, they must say"Restricted for ACC Fund." Otherwise they go into general fund.
Remember if you order books online, through Amazon.com, 5% of money will be donated to NORD. You must remember to let amazon know you are an ACCF member. (clarification: Items must be ordered through ACCF Bookshop)
When emailing the group, always make sure the subject box is correct. This makes it easier to find something quickly.
I want to thank the ones of you who have been helping Mr. Zotos. He needed our help badly and got it. I received his letter and once I posted to the group, you went right to work on it.
Dan and Pru and Sharon have been handling the "greetings" for our new ACCers. This has taken a load off me. Also the new ACCers then are able to just jump right in if they want. I am sure you all are keeping up on the news about tomatoes and cancer.
Barb sent me adresses for all oncology journals. I have been working on those.
On 2-22-99 Pru sent me info on ACC research. I have written and am waiting for a reply. If you want to read, it is in the archives.
Hopefully Patt E, is going to help with our " not for profit status". She understands these things. Along with Carol we should get some action on this. Also, Patt is knowledgeable about the NCCS, (National Coaliition for Cancer Survivorship). They are involved with quality care and clinical trials.
The NCCS started in Alburquerque NM, which is where Patt is. Anyway,Patt says if we do the paperwork, gathering what we have on our ACCF site and sending to her, she will act as our go between. She has been told this by the NCCS.
Patt, is going through chemo at this time, and a lot of us are and we know what that does to us. Realistically, Patt will need a back-up person to help. Do we have any volunteers?
I think Dan did a great job on his chemo packet, but he is also helping out with lots of other things too. Don't want him to be stretched too thin.
Suzanne from Colorado is organizing a bike ride fundraiser for us Lets all hope for good luck with that.
We are now 196 strong. Every week we get new ACCers. It makes you wonder how rare we really are.
We have another 2 names for the memorial page. As you all know, Bill Wright died 1-18-99. Also Chris Grass from Japan. The older ACCers know Dennis Grass. He is a dedicated fighter for us. She also left behind a very young son. Until Chris got really bad he was here at the group almost daily. She is already on the memorial page.
Our hearts go out to those who fought the good fight and the families they left behind. I got a letter from Sharon Wright just the other day. She will continue the fight in Bill's name.
If you have any suggestions or comments please let me know. I guess that is it for this month.
Remember to be strong
Nancy
1 February, 1999
Hello group,
I want to get all the new news for you first.
I have some new non-computer people that I need penpals for:
1. Age 59 Female, Mt. Pleasant, SC - dx in 1993.
Sinus, glands,now she has ACC in orbits.
2. Age ?, male, Pittsburgh, PA - dx in 1992.
I do not know where ACC is.
At this point all I know is he has had chemo and rad.
We also have had 2 new computer people. These people were all found through the mailings of the flyers.
To get free drugs when you can't afford them, go to
1998 Directory of Prescription Drug
Patient Assistance Programs These are for cancer patients.
The article that I was asked to do is supposed to be out next month in the SPONCH newsletter. Helena has also had an article published with them.
Pru and Dan are working on a greeting page for the ACCF web-site. We still have 2 of the ACCers sending personal greetings to all newcomers..
You all know about the passing of Bill Wright. He has been put on our In Memory Of board on ACCF website.
If you need to fly anywhere for medical reasons, do not forget about the Corporate Angel Network. They will fly you to your destination for free, but MUST be medical reason. Phone 941-328-1313, web address is The Corporate Angel Network
The correct mailing address for donations to NORD is:
The Adenoid Cystic Carcinoma Restricted Research Fund
National Association for Rare Disorders (NORD)
100 Route 37
PO 8923
New Fairfield CT 06812-8923
Once the 35K is reached, 5K goes to NORD, to be used for looking for researchers for us.
I think the reason a lot of people do not know about NORD is because they do not spend a lot of money on advertising.
OK, there is no new news on our "not for profit" designation and I do not know why. I have not heard anything from the person who was handling it. I am now trying to find out if paperwork can be shifted from one state to another. When I know more, you will. If any of you know ANYTHING about this process, I could use your input.
If you are keeping up on the post to group, you know Susan and Dawn are working hard at finding donations. Remember folks, you have to start somewhere.
The flyers are working, we find new ACCers monthly. And please, I do need penpals for those who do not have computers. I have been writing, and emailing those who do not want to join group conversations as of yet. When you read above the data on the new ACCers, it would help if the cases were similar. But it is not necessary. I would like the ones of you who already have penpals to email and let me know how it is going. If you email me, it is quicker than myself emailing all of you.
Carol is doing great on keeping us updated with NORD amounts. Please remember if you can't send donations, do not feel bad. We are not all able to financially afford it. At any rate, the 6K we have now, is 6K more than we had last year. Sure, I wish we had it all now, but we must be reasonable in our expectations.
We are over 170 ACCers now. Just think of all the ones we have not reached yet. It just takes time and lots of work.
I am going gangbusters with sending flyers to the pathologists. We have enough flyers and envelopes for now. Thank all of you who have helped. I am still waiting for insurance booklets with docs names and addresses. If nothing else, tear out the yellow pages and send them to me.
I have received one bio so far. If we are going to put them at the ACCF site, you must send them to me.
I guess that is about it. If I have forgotten anything, let me know. And if any of you have any ideas that will help, PLEASE, let me know.
Thanks for all your help. We could not do it without each other.
Be strong.
Nancy Whitman
cochair
ACCF
PO Box 121
Maybee MI 48159-0121
January 1, 1999
Hello Group,
Happy New Year!
First off I want to give you all the addys for trials that are soon to start:
http://www.cancerguide.org/clinical_trials.html
http://www.cancerguide.org/internet_trials.html
Karmanos Cancer clinic, Detroit MI
Ireland Cancer Clinic, Cleveland Ohio
Also there is a trial/test for medicine to heal mouth sores from chemo. They will pay $100.00 to any participant. Call Susan at 610-664-4033.
We have lost another member. Mrs. Keany. 12-19-98. We are so very sorry for her husband and other family members. She fought the good fight, and lost.
If the people from the New York area will contact Claire Rubenstein, she needs people to go with her to the Cold Spring Harbor Clinic. She has a date set up to meet with the NY senator.
Prudence and Kathy have volunteered to be the groups editors. When someone has letters to write, they should go through them to check facts, spelling, and punctuation. We are becoming a group with a voice, and at least some of our efforts are being heard. As ACCF becomes better known, we have to look like we know what we are doing. If any of you in the group have any questions about this please email me privately. These things are not written in stone.
Dawn has been doing great things with her soliciting funds. We should all be sending letters to our senators. If we could come up with a standard letter, and then insert our own reps name, this would be great. So you people send your drafts to Pru, we should come up with a good letter.
Dr Scott Johnson,at U of Texas has some good luck with laser surgery for lung and breast ACC. We should keep on top of that.
Susan received a letter from NCI. I am sure you all read it. If you missed it, contact her.
We should be over $3,000.00 now at NORD or pretty close to it.
I have been asked by SPONC to write a article about myself. Nancy Leopold, the editor said it would be in their next issue. I will send this to Pru so she can edit it for me. As you all can see my punctuation and spelling are not the greatest.
We are now at 166 ACCers. At this time last year we were 6. And this does not include the lurkers. Eventually they want to be heard.
I need to get supplies again. I need stamps and I have to pick up more cover letters. I sent 1,000 out in the past 2 weeks, to avoid the postage increase. So I am begging for money again.
If you have sent me your health group doctors, they have all been done. Now I am sending them to pathologists. After all, they are the first ones who see ACC.
That is it I guess.
Be strong.
Nancy Whitman
Co-Chair
ACCF
PO Box 121
Maybee MI 48159-0121
1 September 1998
Hello group,
Time for the update again. First things first, please try and remember to use the subject box. It is not a ironclad rule, just that it makes it easier to find things.
I know that I have most of the medical info on you people. But I finally got a printer, and if you would go to ACC web page and fill out the form, it automatically is sent to me. I have probably the worst hand writing modern man has ever seen.
OK, on to other things. Thank you to all who have sent stamps and $. I won't list the names. You know who you are.
We are now over 120 ACCers. Not as rare as the docs say. I go to PO Box twice a week. There is always at least one new, sometimes 3. You guys who help me with the correspondance, thanks a million. I can always use more penpal people, so if you want to help, email privately. I do not want to send addresses out publicly.
We are now listed with the AMERICAN SELF-HELP CLEARINGHOUSE. This is a FREEservice associated with the Northwest Covenant Medical Center, Denville,NJ. They publish The Sourcebook, a directory of national self-help orgs. and their website.
The Fermi Lab has also faxed again, saying that if we need any paper info, just let them know and it will be mailed to whomever needs it.
We are listed with ABOUTFACE. They are more of facial disfigurement due to birth defects and accidents.
I have emailed several pathologist groups and am waiting for replies. Carol got me this info.
I don't have anything new to add from the State Cancer Registries.
You have already heard of the clinical trials I found out about. Also some that I did not find.
You can write or email NORD to send you donation envelopes, when you ge them, fill out the back yourself. Give them to whomever buys you gifts. Birthday, anniversary, etc. This is your life we are talking about.
I still am asking for the books put out by the health insurers. You know, the ones your employer gives you to pick your docs. I can never have enough names and addresses of hsps., clinics, med.oncs., rad.oncs. I have been keeping a rol-dex with the names etc. of who I mail too. Any ways that you can think of to get more addresses and names, that means more people become aware of ACC or AdCC.
I know that I have not been posting much this past month. But I do read all of them. I have been keeping busy. I do the mailings while I read the posts. Even though I think I can be Wonder Woman, I can't. As with all of you, I'm sure, occasionally, you just have to close the door.
Please get me those addresses. The more you give me, the less I have to hunt myself, the more I get mailed. You all know by now, I am not above begging for stamps . If you don't feel you want to send $, (I am running away soon) get money orders from Staples, or Office Supply, any state wide place. Basically, this is my expense list: biz size envelopes, stamps, printing of flyer and cover letter. I paid $80.00 for a po box for 1 year. The rest is just stuff like paperclips, staples, etc. I pd $16 for a self inking address stamp.
Well, I think thats it. If you want to yell or anthing, do it by private email please.
Be strong
Nancy Whitman
co-chair
ACCF or AdCCF
PO Box 121
Maybee MI 48159-0121
Many People, from all corners of the world have joined together on the
Internet to exchange information about this rare cancer. We are trying
to share our knowledge, experiences, and information in order to combat
this cancer.
To subscribe:
Send to: listserv@listserv.acor.org
Subject: blank (or -- if you belong to AOL)
Message: subscribe ADEN-CYST First-Name Last-Name
June 1, 1998
Many of you may remember that when I came on this project, I put a time limit on my involvement. Six months I believed would be enough time to get something started and I was right! Since January 1998, something started and I was right!
In that time we:
It is very tempting to let this thing slide now that the newspapers are full of new treatments and cures. We must remember that the new treatments and cures only came about because cancer patients would NOT accept the bleak words that were being given them. They have fought and raised money and awareness and we must continue to do this. I will continue to be on the "list" and come in whenever I have something to say .... which as many of you know is often.
With the newspapers screaming with the new cancer technology and treatments, it is easy to say "let it go". A rising tide carries all ships. But when we read carefully between the fines, the story is different. Head & Neck and salivary gland cancer seem absent from new statistics. Clinical trials for acc are rare .... and cures are evasive. Knowledge is scattered and varied. Treatment often depends on a "we'll see if it works attitude".
This we cannot accept. It is not enough to hope that ACC will be included. It is something each of us as patients and family members must demand.
Roslyn Sharon
Oh, by the way .... The BOOK ... has still not been located in the U. S. I will let you know if and when it is.
April 1, 1998
As our list continues to grow, it is natural that there are many social, political and cultural differences. We have already experienced the heated discussions around alternative and/or anecdotal medicine, treatments and now the privacy issue. It's good to know that cancer doesn't discourage strong opinions.
All of these issues can and be should be discussed, but listened to with our own good senses. We are all adults with our own life experiences and therefore can make our own judgements. If we value the ability to exchange information with one another, we have to respect the right of the other to use or not use that information As a group, we are also lucky that we have someones who can and should moderate what is appropriate or not appropriate. This should not be construed as censorship. The list is a public forum. E-mail can be your private forum.
Data collection continues and Nancy Whitman (our data keeper) now has over 30 acc'er in her data base. As more and more flyers are made public, we hope to attract more members. The data can be made available to any researcher or physican who requests it. There are of course, no names or addresses.
We hope our web site will attract enough attention to create interest in ACC.
If you are a patient seeking information about clinical trials, you can be notified by E-Mail
Go to Centerwatch.com and register for Trial Listings, Notification, or FDA approval. You can submit your request for a particular area and they will advise you when something comes up that might benefit you, the subscriber. Of course all information is confidential.
NORD. The National Organization for Rare Disorders, a 501(c)3 Non Profit, has put in place a way that interested parties can contribute directly to a research fund for a specific disease. Many of us have found ourselves frustrated by the lack of knowledge of ACC. It is now possible to change that. Working through an organization such as NORD, we can direct our contributions to the organization that will see it goes to help ACC directly.! They also maintain a confidential networking program go to NORD, or send e-mail to orphan@nord-rdb.com
Use this as a way to honor your friends and family. The contributions should be made to the ACC Research fund at NORD. They are tax deductible and will be acknowledged. The fund will be announced in their summer newsletter. The sum of $35,000 must be reached before a grant will be considered.
Payroll deduction is available - Ed.
Roz Sharon
