Case Studies: ICORS List Owners in Their Own Words

1. Asperger

List Name: Asperger

Purpose: ASPERGER is a discussion list that is open only to parents or caregivers of children with Asperger syndrome (AS), High-Functioning Autism (HFA), or Pervasive Developmental Delay (PDD), and adults with these conditions. It is not only for fact gathering, but also a place for support, concerns about our children, and a place to brag about their accomplishments. There are also occasional bouts of silly chatter to relieve some of the tension that is inevitable as we struggle with school systems, doctors, neighbors, etc.

Content Overview: List posts cover the gamut of raising children on the high functioning end of the autism spectrum. School issues, appropriate education laws, hygiene, dealing with other family members and the community, independence, disability benefits, college, work, and some of the more humorous situations we find ourselves in, are all covered. We have a number of autistic adults who participate. Some are also parents, and other are there to find support and answers, and to provide another perspective as parents search for the best ways to raise our children.

Subscribership: 538 subscribers. Most are parents of children and adults on the autism spectrum. Some are parents who are also autistic. Some are autistic adults who are not parents. They come from Australia, Canada, Denmark, Finland, Ireland, Israel, Netherlands, New Zealand, Romania, South Africa, Taiwan, and the United Kingdom, with the vast majority coming from the United States.

Unique Service and Benefits to Subscribers: Because the membership is composed only of people who live with and love at least one autistic person (no professionals unless they are also parents-of or autistic), members have a safe place to discuss their issues, without the judgment that can come from those who have studied, but not lived with, autism. New parents are able to learn from the experiences of those who have been there and done that, as well as learn from the experiences of autistic adults, who often have excellent insights into why a child may be behaving a certain way.

Examples: In one case, we were able to put a parent whose child was in trouble with the law in touch with someone in their area who was able to turn things around for that child. In many others, we have helped parents get their child the education they needed. In many cases we have provided a safe place to vent, and to find support for the many challenges and joys that come with raising and loving someone on the autism spectrum.

Featured Use of LISTSERV®: The archives are a wonderful tool for new subscribers. They contain many years' worth of information on almost every topic. Because some of our subscribers come to us at the end of their rope, and are unable to master their subscription management at that time, list owners find it very useful to be able to tweak subscriptions in a way that works for everyone. For the majority of subscribers who can manage their own subscriptions, LISTSERV offers a rich menu of options to customize those subscriptions.

LISTSERV software offers better security than other mailing list options. This is a huge benefit when dealing with sensitive topics. LISTSERV has the options to fully include our members with visual impairments.

Most Important Thing to Understand: It is a support list. In addition to parents of children diagnosed with AS/PDD/autism, this list also welcomes adults with these conditions. It is important that parents remember to respect the perspectives of the adult autistic community.

Key Challenges and How List Addresses: For parents of school-age children, an appropriate education is often the number one issue. For those whose children are past the point, jobs and transition support are big issues. In both cases, families deal with integrating their child into the community around them, and prepare them to live as adults. LISTSERV has given us at least two huge benefits in those areas.

First, parents have instant access to others who are dealing with or have dealt with any issue. Within an hour of a plea for help, there are anywhere from one to several dozen offers of assistance.

Second, autistic children no longer have to grow up feeling isolated; the only ones who are like themselves. They now have a community. They are able to correspond with each other if desired, and even have the opportunity to meet face-to-face.

2. Hypokalemic Periodic Paralysis (HKPP) Discussion

List Name: Hypokalemic Periodic Paralysis (HKPP) Discussion

Purpose: Our subscribers are diagnosed with one or more of a group of rare genetic disorders known as ion channelopathies. These disorders cause muscle weakness and/or paralysis, cardiac rhythm abnormalities and frequently pain and permanent disability. This LISTSERV community is for the benefit of persons who have Periodic Paralysis, their families, and is a means whereby we share support and knowledge gained through research and experience.

Content Overview: Content varies from patients sharing experiences and management techniques to extracts from medical journal articles, to comments and input from physicians and organized informational sheets that patients may take to their physicians.

Subscribership: 183 members. Some are caregivers such as parents or spouses of the affected person.

Unique Service and Benefits to Subscribers: We were the first LISTSERV list to offer a meeting place for patients with HKPP, and remain the only one whose membership is screened to admit only diagnosed patients.

Examples: The incidence of the ion channelopathies range from 1 in 100,000 to 1 in 250,000 people, depending on which of the several types a patient has. For this reason most patients never meet another person with their disorder, and their physician has often never cared for a patient with their disorder. Over the 14 years we have been in operation we have drawn subscribers from 30+ countries worldwide. Because we have a large cohort of patients, we have recognized and reported aspects of the disorders that had never been described medically, which expanded the knowledge base.

Featured Use of LISTSERV®: We maintain a website hosted by ICORS, and through ICORS we currently have 99.9 percent of all posts ever exchanged on-list archived and available for keyword, author or subject search.

Most Important Thing to Understand: We are focused, attempt to maintain medical accuracy, and encourage patients to become responsible consumers of health care, and act as their own advocates.

Key Challenges and How List Addresses: Many of our subscribers do not have access to knowledgeable physicians, and may be left without treatment or management information as a result. We have provided physicians with medical information in numerous emergency situations, which would be impossible to do without email and web access.

3. Eastern European Adoption Coalition (EEAC)

List Name: Eastern European Adoption Coalition (EEAC)

Purpose: In the early 1990s, a very small number of children from orphanages in Eastern Europe became available for adoption by Americans. Over the ensuing years, that initial trickle of adoptions became a flood as more and more hopeful parents brought their children home to join their "forever" families. Sometimes, the transitions did not go as smoothly as expected. The past traumatic experiences of these young adopted children were often terrifying and disruptive. To best help these children, their new parents had to acquire comprehensive knowledge of child development and an understanding of childhood trauma, not usually needed by parents of more typical children. Adopting a child about whom you know almost nothing is bound to be a challenge. We offer a body of parent experts who are here to help with that challenge. Together, with the proper tools, we can raise these children to achieve the best possible lives. The EEAC lists provide these tools and have helped many thousands of families through the child-raising process. As the years have gone by, we all have become creators and participants of an enormous support network specializing in issues unique to children adopted from Russian and Eastern European orphanages. As it turns out, the Internet has been the perfect medium for reaching the largest number of parents and families. We believe that a knowledgeable and supported parent makes the best parent. By helping each other, we know we help children find happy and positive futures with their new families; futures that would have been denied to them had they stayed in the orphanage.

Content Overview: Message traffic on EEAC lists involves exchanges running the full spectrum of pre- and post-adoptive issues. The Eastern European Adoption Coalition maintains the following lists on ICORS:

  • A-PARENT-RUSS – Adoption from Russia
  • AEEA-L – Adoptive placement into Australia
  • AZERBAIJAN-L – Adoption from Azerbaijan
  • BELARUS-L – Adoption from Belarus
  • BULGARIA-L – Adoption from Bulgaria
  • GEORGIA-L – Adoption from the Republic of Georgia
  • HSEEA-L – Homeschooling of adopted children
  • KAZAKHSTAN-L – Adoption from Kazakhstan
  • LIFELINE-L – Critical support for families at particular risk
  • MOLDOVA-L – Adoption from Moldova
  • NZEEA-L – Adoptive placement into New Zealand
  • PABT-L – Post adoption of babies and toddlers
  • PEP-L – Post adoption of school age children
  • ROMANIA-L – Adoption from Romania
  • SEEA-L – Adoption by single parents
  • SPECIALNEEDS-L – Post-adoption of children with medical special needs
  • UKEEA-L – Adoptive placement into the United Kingdom
  • UKRAINE-L – Adoption from Ukraine
  • WEECARE-L – Post-adoption of children with Fetal Alcohol Syndrome

Subscribership: There is currently a combined 10,175 email addresses subscribed to our 20 lists. This is not an unduplicated count. It includes several addresses that are subscribed to more than one list.

Unique Service and Benefits to Subscribers: Our lists are handled a bit differently than most of the support groups on the Internet. Because of the sensitive nature of the topics discussed on our lists coupled with our members' great need for support, it's critical to provide a safe and nurturing environment. EEAC has always had volunteer monitors who make sure that our members stay on-topic and that there are no unkind remarks made toward other list members. New members are screened for a period of time to make sure they understand our ground rules. We do not archive posts. Instead, we work on a much more immediate format of question and answer. Because of this format, we can cover a vast array of issues and our lists are always dynamic. Although our lists started with members from the United States, they have become international and include parents from Italy, Germany, France, Israel, Australia, New Zealand, Canada, and Ireland. This kind of coverage would be impossible without the Internet. Our effort is to reach as many people as possible and we feel we succeed with this format.

Examples: Most all children in institutional care suffer from neglect. There are simply not enough caretakers to effectively minister to each child's needs. All children need opportunities to explore their world so that the neurological connections in their brains can develop normally. Children who lack these opportunities by being confined to cribs for long periods of time suffer greatly. It is estimated that for every three to four months spent in institutional care, a child will lose one month of physical and neurological development. Young children, and especially older children, are traumatized from their time in an orphanage.

The result is that these neglected and traumatized children frequently create their own unique forms of self-stimulation in a desperate effort to keep their development alive. Some children present with what looks like autistic behaviors that persist for months after they join their new families. Their adoptive parents are understandably frightened and desperate for good information as to a correct diagnosis and appropriate therapies. We now know that, for most children, these odd behaviors can lessen over time. We also know that while some developmental delays may take years to address or may remain into adulthood, new and exciting approaches are constantly being discovered. Parents who come searching for information from our lists now have access to the comfort, resources, knowledge and understanding they'll need to appreciate the uniqueness of their children and to address any ongoing delays.

Very few people who adopt from Eastern European orphanages expect to bring home a child with substantial challenges, yet this is often just what happens. Some parents are totally unprepared emotionally for the tremendous strain of dealing with multiple, unexpected diagnoses. Frequently, these overly stressed parents become depressed and isolated. The list members of our EEAC community recognized this syndrome early on and, 11 years ago, one of our members did some research into the causes and frequency of this problem. The end result is that hundreds of people have been helped simply by knowing how pervasive this syndrome is and, more importantly, the steps to take to help themselves weather the storm.

When given the chance, children can be remarkably resilient. Considering the desperate trauma endured by these adopted children, it is testament to their loving and committed families to know that many are doing extremely well. This is cause for celebration and gives us all hope for the future.

When asked what an EEAC list means, list subscribers have replied:

"This list gives me hope. As much as I feel for those parents and children going through some of the problems we have, it gives me hope when they share their adoption stories and what is working for them. We are a tough, determined bunch!"

"This LISTSERV® list helped to keep me grounded in positive parenting approaches. This list serve bolstered me up when it felt like the world was judging me as a bad mom. And oh, is it easy to join the mother critical world and drown in self blame. But with support just a few keystrokes away, I always get the morale boost I need, just when I need it most."

"This LISTSERV® list is amazing. Not only has it helped me with challenges I've faced with my son, but I have also sought advice for my sister regarding her ADHD (homegrown) son, and the feedback I've gotten for her has been waaaaay more on target and useful than anything she'd gotten elsewhere."

"'Lifesaver' is the word that first comes to mind when I think of [EEAC]. Its 'community' for post-adoptive parents brings invaluable advice and desperately needed camaraderie to parents who have – usually blindly – adopted troubled children. They often feel bleak isolation, and to know that other parents are struggling – and succeeding – keeps the light of hope alive."

Most Important Thing to Understand: That we are here to help, educate, and support – not to judge.

Key Challenges and How List Addresses: Children who have suffered from neglect, abuse, or trauma often present with challenging behavioral, medical, and educational issues. Parents of these children are sometimes pushed to the limit emotionally and in need of tremendous support and understanding. Our focus is geared toward helping struggling parents find the resources they need to parent these challenging children.

Assistance to the pre-adoptive community includes selecting an agency to assist in the adoption process; preparation of paperwork, both in their resident country and for the adoptive country, arranging finances for the adoption, evaluating medical and other information on potential referrals, and arranging travel to and in-country housing during the trips to finalize the adoption.

The support offered by our post-adoption lists comes from other subscribers who have already faced the same challenges and have gained practical experience in dealing with them, as well as others who are currently dealing with similar situations. We discuss topics such as the joys of parenting, cultural differences, adapting a child to a new family and to a new culture, dealing with medical, physical and mental health issues, effective and compassionate ways to discipline, attachment and bonding, and parenting issues in general.

4. Hemi-Kids Discussion Group

List Name: Hemi-Kids Discussion Group

Purpose: To provide information and support to families of children who have a diagnosis of hemiplegia or hemiparesis due to an infant or childhood stroke or other causes.

Content Overview: We have 1,630 subscribers and are continuing to grow weekly. Parents of children who have hemiplegia or hemiparesis due to infant or childhood stroke or other causes. Hemiplegia/hemiparesis means paralysis/partial paralysis of one side of the body. These children may have multiple disabilities, including difficulty using one hand, epilepsy/seizure disorder, visual field cut, speech and language issues, learning differences, and behavioral differences. They require years of therapies and visits to multiple medical specialists. If the hemiplegia is due to an early stroke, as is the case with 95 percent of these children, often the cause of the stroke is unknown.

Unique Service and Benefits to Subscribers: Hemi-Kids/CHASA was the first and continues to be the only international group, both online and off, serving families of children who have the unique condition of hemiplegia and infant or childhood stroke. Parents locate us through the Hemi-Kids list, then go on to utilize other services that CHASA provides, such as an annual family retreat, local support contacts, college scholarships, and information about clinical trials and recently published research.

Examples: The Hemi-Kids list started in 1996, with a core group of 35 families. An attorney, with a diagnosis of hemiplegia due to a stroke at birth, joined the list in 1999 and found it so valuable that he suggested we create a non-profit organization to serve these families. This organization, CHASA, through the dedication of a number of volunteers, all members of the Hemi-Kids list, has continued to grow and help families. Families connect in person at an annual retreat that is held at various locations in the United States. Families have traveled from as far away as Singapore and Australia to meet at this retreat.

Children who were first with us in 1996 are reaching adulthood and continue to attend the annual retreats. At the 2009 retreat, a panel of 12 teens and young adults, who have hemiplegia and are the children of Hemi-Kids subscribers, held a Q&A session to answer questions from parents of younger children who have hemiplegia. These accomplished teens and young adults shared information about how they live life using one hand and questions ranged from "how do you brush your teeth?" to "how do you open a jar?". They discussed living with epilepsy and vision field cuts, driving/car adaptations, social issues, and finally those most important questions about how they were able to leave home and live independently.

For weeks, the parents of the younger children talked about how these teens helped them see a bright future for their children. One parent learned that her 13 year old could find a way to shampoo his own hair. Another learned that she was overprotecting her child. Others learned of ways to adapt classes at college. As the founder of Hemi-Kids, I was approached over and over at the retreat, as I'm approached through email, with parents telling me that they could not imagine navigating this world of hemiplegia without the support of the Hemi-Kids family. One long-time list member summed it up by telling us that this group has become a family and that she returns every year to this "family reunion". Children and teens who have met through the list and retreat continue to have contact throughout the year, and they tell us that they now know that there are others like them and they do not feel alone.

Featured Use of LISTSERV®: Subscribers often utilize the Digest feature to manage the high volume of messages. This is helpful for busy parents of a child with special needs. Subscribers also utilize the message archives and search feature to search for information on specific issues. The archives are a very valuable source of information for our subscribers.

Most Important Thing to Understand: Hemi-Kids is a place where parents of children with hemiplegia can find hope, support, and information. They realize that they're not alone in the this journey because they find other parents who are going through similar challenges. Parents find the list to be of such value that they rarely leave the list, even as their children age into adulthood. The children who are reaching young adulthood join the list because they also find it to be useful. The list continues to evolve to serve both generations.

Key Challenges and How List Addresses: Infant stroke occurs in 1 in every 4000 live births. Childhood stroke occurs in 6 in every 100,000 births. Parents often tell us that before finding the Hemi-Kids list, they felt very alone and isolated. Although their well meaning friends and family tried to understand the challenges faced when raising a child with multiple disabilities, they often just did not understand the needs of the child and the parents. While the list is not a source of medical information, parents tell us that they learn about medical treatments and therapies through the list and are able to return to their community to consult with their child's medical professionals about these therapies. The email list archives allow us to provide parents with a rich source of information. The daily email messages and digest allow parents to connect to share information and support.

5. FMS-Recovery

List Name: FMS-Recovery

Purpose: The purpose of this list is to provide a forum for people who suffer from fibromyalgia syndrome (FMS) and their loved ones to discuss issues of the condition itself and the broad variety of treatments that are used to try to relieve the symptoms of this condition. There is no cure, but proper treatment can slow or even to some extent reverse the degree to which this condition can progress.

Content Overview: Our list discusses a variety of treatments and ways to alleviate the impact of coexisting conditions to fibromyalgia – for example sleep loss severely effects FMS, so many must work hard to overcome any sleep disorders they may suffer.

Subscribership: We presently have 189 subscribers who either suffer from FMS or are close to someone who suffers from FMS and seek to better understand the condition and perhaps help in treating it.

Unique Service and Benefits to Subscribers: Our lists provide a variety of possible treatment ideas. There are existing lists that discuss some of the common treatment protocols, such as the guaifenisin protocol and the Lowe protocol, but we emphasize discussing all options and providing a place for new treatments to be discussed, which makes us unique. Other groups offer support groups and forums for discussion of impact of FMS on people's lives. That is not our intent; this list is meant to be a focused source of information on the wide variety of treatment options and to discuss and review new treatments ideas as they arise.

Examples: Two treatment plans in the past that worked through this list to become widely know were the use of coconut oil in place of other cooking oils (why this helps some, we don't know, that it does we have documented in this list). A second occurrence of providing a forum for a new treatment was in the case of the use of custom homeopathics. In this case we may have been too successful because the company that made the homeopathics gave out our address as the best information source on their program and as moderators we had to take action to ensure that we maintained our multi-treatment focus and were not taken over by their large volume of postings.

Featured Use of LISTSERV®: Because of the combination of the easy management tools we have for our list with LISTSERV software, and the fact that many new members can find all the answers they want simply by searching the archives, has made this a very trouble-free list to run and one that does not put too great of a time burden on volunteer list owners and moderators. The fact that when there is a problem, such as an ISP blacklisting us, that problem is immediately provided to moderators and owners, which permits us to identify problems and even work toward the solutions we can use without even needing to use the web interface.

Most Important Thing to Understand: We place the value of this list on its content, not its volume. Too many lists I have been a part of base their value on message traffic. We deliberately choose to keep focused on our target issues and not overwhelm members with message volumes which contain much that they have no need to read. For this reason, our archives may very well be our greatest resource.

Key Challenges and How List Addresses: The unique ability of this method for talking about FMS is based on the nature of the condition itself. FMS is a syndrome that is a collection of symptoms whose cause is unknown. It is entirely possible that there may be more than one possible cause for these symptoms and thus we need the multiple treatments we discuss. In single treatment lists, such as the Guai list, the normal reaction if a person states that she or he is not seeing any improvement from the protocol is another person insisting that the protocol is right and the person must not be following it properly. On this list, that sort of statement might lead to some basic questions to ensure you did follow the protocol, but then would normally suggest one or more alternative treatments instead. We have members who have tried many of the available protocols and even combinations of them and we are intentional in insisting that all protocols and all patients be respected. That this list is an email list is very beneficial to our purpose because often those with FMS, who have not found an effective treatment, are virtual shut-ins at home and often unable to work or generate income and thus more likely to be on a dial-up connection, to which this text-based format is much friendlier than many informational websites.

6. Bullamanka-Pinheads

List Name: Bullamanka-Pinheads

Purpose: To connect practitioners and otherwise, often in remote or urban locations around the earth, who are involved in the preservation of the existing built environment, outreach, community support, problem solving, education, idle entertainment.

Content Overview: Preservation of the existing built environment within a closed-system earth, stories shared, help given, questions answered, people connected.

Subscribership: Just past 13 years of activity in October, roughly 100 subscribers on average. Group includes traditional trades practitioners, writers, educators, architects, structural engineers, architectural conservators, and the curious and friendly.

Examples: Currently one of our subscribers is in the Yucatan in the jungle attending an environmental conference. He is a stonemason and a story teller and, as an avid audience, we are keeping tabs on him. His writing stories about his work and adventures, and the audience that he has through the list, induced him to attend a week-long writers' conference in Minnesota. Another member recently lost her PALS glasses while traveling and we all pitched in with various comments to aid and confuse her. Post-Katrina a number of subscribers participated on-the-ground in various efforts in New Orleans, in particular to work in the historic section of the Lower 9th Ward. We also recently learned how to avoid cone nosed kissing bugs.

Unique Service and Benefits to Subscribers: Serves as a community of support to answer to the needs of individuals who are in the business of preserving the built environment. It is relevant that the most green building is the existing building that is not thrown away. The people who help save old buildings often need a channel of support to save themselves from being thrown away. We connect people.

Featured Use of LISTSERV®: As the subscribers have various levels of computer skills, and various levels of connection to the Internet, some of the connections being dial-up or through their local library, and in several different time zones, the lack of "bells and whistles" works best. We have tried in the past to move the community to web forums and other forms of social networking and in all cases the result was a total failure. We do not share photos, and we do not ascribe to the correction of grammar or spelling.

Most Important Thing to Understand: We long ago made a decision to promote quality of subscriber over quantity. We play a lot of games, joke with each other, and some people found the laughter to provide too high of a noise:signal ratio. What we have found is that when people play games together, that when real important business comes up that a context exists with which we have a sense of trust in the sincerity of the communications. Noise is not distraction, it is the environment within which depth of relationships are cultivated.

Key Challenges and How List Addresses: Email is asymmetrical in that a subscriber either participates in full, or does not participate at all. It is difficult sometimes to control the excessive flow of emails, to not overwhelm people in information that they consider irrelevant to their own personal perspectives.

7. Quotes and Testimonials

"The Asperger list is a place to go for support and information. Whatever you are dealing with, at least one other person here will have an answer for you – or at least a shoulder to cry on. Here, also, you will find others who understand every triumph, and will celebrate every accomplishment. Here, you will be understood."

Karen Reznek




"VSIG, or Vitiligo Support and Information Group, is proud to be a part of the ICORS community; for we offer all natural educational information and support on nature's health and healing for sufferers of vitiligo and related illnesses. In the practicum phase of my Doctor of Naturopathy, and a life long sufferer of vitiligo, it has been my mission for more than 30 years to research and actively work toward healing naturally. Through the Vitiligo Support and Information Group, we have given hundreds of people hope and a place to belong. We work on body, spirit and mind to potentially heal vitiligo with nutrients, stress reduction and an ICORS community of love."

Wanakee Hill




"Thank you. You didn't have to hold my hand through my hundred questions but you did. Many blessings await you in heaven, this I am sure of!"

HKPP list subscriber




"Hemi-Kids is often the first place families turn for support and much needed information after receiving a diagnosis of hemiplegia or stroke. It is a resource, a support group, a tool for advocacy and awareness, and a life-line. It connects families who help each other through the overwhelming and complex world that occurs after a baby or a child suffers a stroke."

Nancy Atwood
Founder, Hemi-Kids and Children's Hemiplegia and Stroke Association




"Our list offers hope to those who have not found effective treatment for their fibromyalgia syndrome – hope of effective treatment through our information and hope from talking with our longer term members, who have seen improvement in their symptoms through one or more of these protocols."

Chuck VanderVeen


 


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