Question:
Dear Dr. <drs name here, My name is <your name here, and I live here in <city name which is part of the community that you serve. Several years ago, when I was a teenager <or whatever age you were, I became pregant and placed my child for adoption. At the time of placement, I was young and healthy, and so was my family. However, as time went on, health problems began to crop up in my family: <indicate some health problems in your family. I have often wished that I could let my relinquished child and his/her adoptive family know about these conditions. As a practicing physician, I am sure you have experienced the frutration of attempting to provide quality care to patients with little or no family medical history, and you understand the importance of knowing as much as possible about the history of disease in a person’s family. For many years, a group of people in Nevada have been offering a service known as ISRR, International Soundex Reunion Registry. This is a passive registry that enables biological relatives who have been separated due to adoption, divorce, foster care, or other circumstances to be reunited with each other. This is a passive registry, which means that no active searching for a family member is done by this service. Instead, both family members must indicate their willingness to be reunited by joining this service. There is no fee to register with ISRR. By refering your patients to this service, you will be able to assist your patients in obtaining a more complete family medical history, providing that their relatives are registered with ISRR. ISRR even provides for a "Emergency Medical Flag" that can be placed in the computer to ensure priority matching in case of a serious medical condition. I am enclosing several copies of the ISRR registration form for your use. More copies can be obtained from ISRR directly. I am not an agent or a representative of ISRR, simply a concerned community member who wishes to make people aware of a resource that could very well save their lives. Thank you for your time. If you have any questions, please do not hesitate to contact me. Sincerely, <your name and phone # Elaine M. Petersen Northwestern University, Evanston, IL. USA
Response:
After reading all of the messages on this ng, I am almost afraid to post. I would like to ask someone to answer me, without anger, please. Why is everyone so against a new registry? Personally, I think that it is a great idea. We need all of the help we can get. I would be happy to pay ten dollars to be on another registry. That is not very much money. What does ISRR do with all of the donations they receive if they don’t avertise and don’t pay people to work for them (all volunteers)? Just curious, no malice intended. Ally
Response:
Smith – My advice to you is to mind your own business. I have not attacked anyone. I have defended myself on several occassions. Sorry if you find that offensive. And I don’t have to defend my fees or anything else. But, I will defend myself and whatever I believe in. I think I have a right to that. Or would you like to see that taken away from me? And you don’t know me, either. So, how does that qualify you to criticize me? Get lost, whoever you are. Carol
Response:
– Hide quoted text — Show quoted text – Petersen) writes: How does this sound? Sounds good, but needs some work. I think "physician" should be substituted for "Doctor" and there need to be a few syntactic clarifications. It should also be made clear that the doctor can offer the ISRR form to both adoptees and birth parents. I have amended the letter between **s. People, please feel free to jump in and work on this letter. Registry. This is a passive registry that enables biological relatives who have been separated due to adoption, divorce, foster care, or other circumstances to be reunited with one another. *(snip)* No active
ISRR is also for use by persons separated by war, and I think it would be a good idea to throw that in as well. Never hurts to cover all the aspects. JB
Response:
– Hide quoted text — Show quoted text -(Alleeoops) writes: After reading all of the messages on this ng, I am almost afraid to post. I would like to ask someone to answer me, without anger, please. Why is everyone so against a new registry? Personally, I think that it is a great idea. We need all of the help we can get. I would be happy to pay ten dollars to be on another registry. That is not very much money. What does ISRR do with all of the donations they receive if they don’t avertise and don’t pay people to work for them (all volunteers)? Just curious, no malice intended. Ally
After reading all of the messages on this ng, I am almost afraid to post. I would like to ask someone to answer me, without anger, please. Why is everyone so against a new registry? Personally, I think that it is a great idea. We need all of the help we can get. I would be happy to pay ten dollars to be on another registry. That is not very much money. What does ISRR do with all of the donations they receive if they don’t avertise and don’t pay people to work for them (all volunteers)? Just curious, no malice intended. Ally Ally: The problem that people have with more registries is that they only serve to further fragment an already confusing array of registries. Many states have registries. AOL, Prodigy, and Compuserve have registries. There are a number of other ones. ISRR was started with an endowment. The idea was to build the ultimate registry, to centralize everything so as to increase chances for a match. The money they recieve by donations now come in small bits usually, $10 or $20 at a time. Printing, stationary, postage and other common office expenses can amount to a great deal of expense. Statsically speaking, the larger the database, the better the chance for a match. If everyone would register with just one registry, then a lot more people could be matched up. A "registry" like Carol’s really has no chance to get large enough to make a real dent in the need. Even if she had 10,000 registrations, it would not be a large enough or diverse enough database to really have an impact. I might point out that Carol would have $100,000 in hand at this point. The only way for ANY registry will ever work is if the vast majority of those affected register with that particular registry. We need everyone that has set up a national registry to combine their efforts with ISRR, not start more registries.
Response:
Of course you will find something about them to slam. I see on the one hand the founders and volunteers at ISRR – unpaid and committed to not letting a fee stand in the way of a reunion. On the other hand, I see you with your hand out for money at every turn – the Search newsletter online, your professional search services, and now your hand is out again with this registry.
Just a thought about ISRR: Has anyone ever thought of ordering a bunch of ISRR brochures, then going through their phone book and taking down the names and addresses of local doctors, and mailing them a few copies each of the ISRR brochures? The sender could send along a letter that said something like: "I am adopted and all my life have had to tell physicians like yourself that I had no medical history. I am sure you have many patients like me, and are sometimes frustrated in your attempts to give quality care when you have no knowlege of their medical history. ISRR provides a means where consenting biological families and adoptees can exchange such information, and even has a "Medical Emergency Flag" for people who wish to inform biological relatives of life- threatening medical conditions that may be hereditary. Please keep these forms on hand for your patients who have been separated from blood relatives and who are interested in obtaining biological histories." My guess is that if enough of us did this, we could single handedly bring in a lot of new registrants for ISRR, at no cost to ISRR. We would also be promoting awareness of adoptee issues among health professionals. Lainie
Response:
[first part of a big fat whine deleted] Maybe you and Dana and Jeff could go somewhere and start a club, a free one of course, and leave the rest of the world alone. Maybe you could
We did have one, called the Adoptees Mailing List. Dana has started a new list focused on search, again available for free. Paula Ross has started a volunteer search network, again many people giving their time and experience for free. Kathy Martin has also helped many people reunite asking for nothing in return. You asked for a business suggestion and I’ll give you one: Instead of whining about your $10 registry, give people the ISRR address [or better yet the forms] and close your registry down. It will take much less time from your busy life, not cost you any computer resources at all, and provide a better possiblity of a match then you can do alone. People would still get matched, and you’d be free to focus more of your time and energy where you can make a unique contribution. — Rosemarie Ventura
Response:
Dear Dr. <drs name here, My name is <your name here, and I live here in <city name which is part of the community that you serve. I am the adoptive parent of <number and sex of child/children here. I have often experienced frustration, along with my doctor and my child, over the fact that my child has an incomplete medical history. We have often wondered if my child’s < allergies, asthma, heart condition, etc is genetic, and we are very concerned about what might be an appropriate course of treatment for these ailments. Furthermore, we are also concerned about future medical conditions that may be genetic, but because we have no medical history for my child, we have no idea what to look for. For many years, a group of people in Nevada have been offering a service known as ISRR, International Soundex Reunion Registry. This is a passive registry that enables biological relatives who have been separated due to adoption, divorce, foster care, or other circumstances to be reunited with each other. This is a passive registry, which means that no active searching for a family member is done by this service. Instead, both family members must indicate their willingness to be reunited by joining this service. There is no fee to register with ISRR. By refering your patients to this service, you will be able to assist your patients in obtaining a more complete family medical history, providing that their relatives are registered with ISRR. ISRR even provides for a "Emergency Medical Flag" that can be placed in the computer to ensure priority matching in case of a serious medical condition. I am enclosing several copies of the ISRR registration form for your use. More copies can be obtained from ISRR directly. I am not an agent or a representative of ISRR, simply a concerned community member who wishes to make people aware of a resource that could very well save their lives. Thank you for your time. If you have any questions, please do not hesitate to contact me. Sincerely, <your name and phone # Elaine M. Petersen Northwestern University, Evanston, IL. USA
Response:
My guess is that these letters would be more effective if a group were to get together, and each person take, say, 5 doctors and write to them. I am sure that doctors talk amongst themselves, and if they all start getting these letters , they may start wondering what the fuss is about. If you have a local search & support group, it might be a good idea to make this a group project. Also, if you are planning a trip to the doctor any time soon, why not bring a few ISRR brochures along and give them to the nurse that takes your history and such? BTW, these letters can also be easily modified for friends of triad members as well. Lainie Elaine M. Petersen Northwestern University, Evanston, IL. USA
Response:
Of course you will find something about them to slam. I see on the one hand the founders and volunteers at ISRR – unpaid and committed to not letting a fee stand in the way of a reunion. On the other hand, I see you with your hand out for money at every turn – the Search newsletter online, your professional search services, and now your hand is out again with this registry. Rosemarie – Do you work? Is your hand out to your employer on payday? Or are you such a saint that you volunteer all of your time and work for nothing? I really doubt that. I don’t know, perhaps I am just naive, but I haven’t figured out how to buy paper, ink, keep my computer repaired, (which by the way, I had to purchase a new one for this project to the tune of $3800.)and spend 12-15 hours a day working for nothing. So, maybe my hand is out. I would like to at some point pay for my expenses. I think if you will check with the Vilardis you will find that what I said was true. They were given a large inheritance to start their project. And when they receive a donation and I’m sure most everyone donates to them, do they have their hand out? Get real, Rosemarie. You can’t do anything for nothing. Asking people to pay $10. each is hardly a profit making venture. Or maybe you don’t know that. You, like Dana probably have absolutely no experience in the world of business. It costs to even call information for a number today. I spent $85. last month on calls of this nature for searching. How do I recoup that, Rosemarie. Would you like to make a donation to pay for my expenses? I thought not. As usual, you are not talking from experience, because you have none. Maybe you and Dana and Jeff could go somewhere and start a club, a free one of course, and leave the rest of the world alone. Maybe you could learn to barter for what you need. I’m sure you are smart enough to find out how to get things for free. I only know two ways to obtain necessities, buy them or steal them. And I steal nothing. Perhaps you have a third way? You are a self-appointed critic and if you will read my post to Dana, you will see what I think of critics. Get out there in the real world and learn what life is really about and then come back and give advice. This newsgroup has simply become a forum for anger and I am sorry I ever responded to the first criticism. But, I will continue to defend myself. I have nothing to be ashamed of. I do charge for searches. The last one I did cost me $250. more than I made. I do charge for the newsletter. It is not large enough to make a profit. I make nothing for the many hours that I put in on it. And I have already explained the costs on the registry. There is only one way I would be interested in hearing from you again and that is if you know how to run a business for nothing. I would hope that you would post it here for everyone to see. We could all use your valuable insight. By the way, Rosemarie. What do you do for a living? Carol
Response:
I’d be interested in hear what ‘huge sum of money’ you think ISRR has
at their disposal. ISRR depends 100% on donations <<< Rosemarie, Wasn’t ISSR originally funded by a large bequeath? I’d have to check further but I certainly remember reading this somewhere. I agree that all who search are wise to register with ISSR. Elizabeth
Response:
Rosemarie – You certainly have a right to your opinion. ISRR was donated a huge sum of money, that is why they are free. I wish I was in the position to make this a free registry, but am not In my opinion, ISRR is not aggressive enough in their advertising and not enough people know about them. Thus, my reason for a new national registry. But, as I said, you do have a right to your opinion. And I seldom agree with your opinion. Carol
I didn’t know this. Who donated the money? A triad member? I agree with Rosemarie that it’s better to have only one big database….but I also agree that ISRR does NOT do enough to publicize. There are still so many triad members who have no idea it even exists. It would be nice if everyone knew, even those who haven’t decided to search yet. Kate Workman
Response:
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