Last Modified: 28 Jun 2011
Most following responses were provided by FSRG's Secretary (officer), who is also the site administrator. Answers 1-9 were provided to FSRG's accountant in the First Quarter of 2011, and answers 11-22 were provided to a service agency directory editor in the Second Quarter of 2011. Answer 9 was provided in a social networking forum in the First Quarter of 2011. The responses come from FSRG's General Handbook, other organising documents, and official statements, such as the faith-based policy. The responses are modified to remain current.
1. Do any of the officers receive compensation?
The officers will not be compensated for being officers, per se, but if the officers hold academic, administrative, or clinical positions, they will be compensated for those positions. The payrate will be determined by evaluating payrates of comparable positions at similar institutional biomedical research and clinical teams. Some rates may be determined by grantees, such as NIH, NIMH, DOD, etc.
2. Does the organization have a Conflict of Interest Policy? If yes, where can I see a copy?
Yes, it is included in the handbook. Typically, all new members are investigated for potential conflicts of interests, which may include interview of the candidate. The reason for the heightened ethical oversight is the innate problems encountered by biomedical research, health-care, education, and support group administration.
4. Directly from Form 1023 - Do any individuals who receive goods, services or funds through the organization's programs have a family or business relationship with any officer, director or trustee? If yes, explain how these related individuals are eligible for goods, services or funds.
Membership, itself, confers certain benefits. Members may receive clinical, pastoral, legal, and IT services. IT services are critical to the operation of the FSRG, since we deployed a set of secure repositories through which FSRG conducts most general operations and research activities. Other 'member services', which are distinct from services provided to medically qualified persons (for example, someone with a disease entity under study) were deemed mutually beneficial to the FSRG. Persons who are medically qualified to receive services, including members, may elect to enroll in a study or receive specialised care not otherwise available without enrolling in a study. Member services are provided on an 'as needed' basis and should not be viewed as replacing existing services the member may elect to otherwise receive elsewhere. Additionally, persons who would otherwise be eligible to receive 'services' are allowed to hold any position, pending ethics board investigation. They may not serve on the IRB and be enrolled in a study or have a family member enroled or working on the study in any way.
5. Regarding fundraising, what types of fundraising programs will the organization conduct (mail, e-mail, word-of-mouth, telephone, website, government grants, etc.)?
All of the above. We also have plans for a media campaign and will be applying for specific NIH, NSF, and DOD grants.
6. List all states in which you will conduct fundraising. (Is this just WV?)
Operations and fundrasing will be in all 50 states. This is an Upshur County, WV-based, Judeo-Christian biomedical research group.
7. Do you ‘operate’ world-wide?
We do not operate outside of the US, but we cooperate with others in foreign countries to achieve mutual goals. There is no money transfer out-of-country.
8. Describe how grants, loans or other distributions to other organisations will further your exempt purpose.
We do not distribute funds, nor do we intend to distribute any funds.
9. Do you have an application form to apply to receive services? If so, how can I obtain such?
Yes, there are two forms you need to initially fill out, one for the applicant and a medical qualification form for your doctor. You can send a request through the ‘Contact Us’ feature, and we will be glad to send you the forms.
10. I'm interested to know why and how it became a faith-based group. I'm not entirely against the idea, but I wouldn't want anyone to feel excluded from the group, if they were not of Christian faith. Those of us with FSS come from all countries, backgrounds, and walks of life. I would hope the new Group would encompass and embrace that.
Professional members must be either Jewish or Christian. Support group members may be of any faith or non-faith. No one needing support will be excluded based on their faith or non-faith. FSRG has always been a faith-based group. The founders thought that was important, as their faith was a guiding force for them and felt that having God in the forefront of their organisation and mission was critical. They wanted the freedom and security to discuss their faith without constraint.
Additionally, if persons in the support group would like pastoral counseling, FSRG would not be able to offer that important service, if they were not a faith-based group. Many well constructed clinical studies have demonstrated statistical significance of prayerful and related pastoral care interventions. Most hospitals have pastoral care staff to meet the needs of their patients and medical staff.
FSRG is interested in the complete biopsychosocial understanding of FSS. One of the research objectives is to investigate what bilateral interaction of the person's faith and FSS there is, which is critical to this complete understanding of FSS. This expanded understanding of FSS may facilitate more effective and responsive treatment modalities for various negative consequences of the syndrome.
11. How does FSRG avoid conflict of interest between conducting research and providing support-related services through the Outreach Dept. (support group)?
Research faculty/staff/students (R-FSS) are not allowed to work in the Outreach Department (support group) because of the potential for unethical situations involving conflict of interest and potential subjects' perceptions. R-FSS may only provide assistance to the Outreach Department, when requested. Examples of times when assistance might be requested of R-FSS include: giving scientific opinions, writing literature, or engaging in non-research clinical consultations. R-FSS must tell persons with whom they speak that they are R-FSS.
12. Within the Outreach Dept. (support group), what are specific examples of the patient/family networking service, besides the online discussion boards? I know you mentioned that networking services are provided besides the online discussion boards in your last email, but I was not clear on which ones were provided.
We have a directory that all members receive. So, persons may use whatever means they find best fits their needs. Also, I believe the Outreach Department is planning to have yearly family meetings, so people can all come together. Importantly, R-FSS also receive a copy of the Outreach Department Directory, and persons should know this upfront. There is no obligation implied or assumed to talk to any research faculty/staff or to take part in any study or related activity.
13. In what way does the WVPTI provide services on behalf of the FSRG? For example, when someone contacts the FSRG – Outreach Department and is in need of advocacy training, support, or education, would they be referred to the WVPTI and told to call WVPTI directly to obtain those services?
The contact information provided for FSRG's Outreach Department is WVPTI's contact information. Persons calling should reference that they are calling FSRG's Outreach Department and ask to speak with (or schedule to speak with) Director Pat Haberbosch. She is also FSRG's Outreach Department Director. If the help they need is not syndrome-specific (ie, not medically-related), Ms. Haberbosch will handle that in-house, but If it is medically-related, she said she would inform them that the R-FSS are involved with non-research clinical matters and that they are the appropriate persons with whom to speak. She would then have them call one of the R-FSS, usually me first, and then I refer them to someone else, if it is not something immediately obvious to me. I have been working on these syndromes for 10 years, and even though I do not yet have my graduate degree, I am experienced with this specific situation. Referrals I make are almost always first made to our Physiologist-in-Chief. Other corresponding faculty (ie, physicians in paediatric anaesthesiology, medical genetics, cardiology, radiology, and orthopaedics) are also brought in on cases as needed. They are located at major university-affiliated centres throughout the US.
14. Does the WVPTI have special expertise on the topic of Freeman Sheldon Syndrome? If so, do they share that expertise on a national level? Are they able to provide referrals to community resources that serve persons in my state that are also relevant to Freeman Sheldon Syndrome?
WVPTI is being trained by R-FSS. I have provided training to Pat Haberbosch and will await her advice on conducting/facilitating a larger group or other individual trainings. Yes, they share expertise on a national level. If they feel they do not have knowledge of your state's local resources, I know they have many memorandums of understanding (MOUs). I am not 100% that they have an MOU with Iowa's PTI, but I 'think' they have MOUs with all states and US Territories.
15. I know that every state has a Parent Training and Information Center. Could a person in my state call the my state's PTI and get similar services/information from that PTI as they could from the WVPTI? Under what circumstances would it be better for a person outside WV to call the WVPTI instead of their state's PTI?
Persons should call WVPTI, not their state's PTI. WVPTI, even when they may make state resource-specific referrals, has a relationship with FSRG that ensures appropriate training and ethical oversight, including records management. FSS is really very different from even other similar conditions. Unfortunately, it is also very poorly understood, with little research having been done. Standard methods of treatment do not work and can result in worsening of clinical status. Also, from a practical standpoint, it is very challenging because the typical FSS patient has hand and foot deformities, scoliosis, multiple craniofacial anomalies, and, as suggested by preliminary data, has above average intellectual potential. This is the only condition of which we are aware that combines pathology with increased intellectual ability. Early in life, this may not be obvious, owning to potential for developmental delays caused by physical problems. So, children require two types of Special Education services--services to accommodate their physical challenges and Gifted classes to foster their potential. This is a critical issue, but much, much more complex than my brief answer here.
16. What are the ways in which the WVPTI delivers advocacy training, support, and education? (For example: Do they provide in-person trainings? Do they host in-person support groups? Do they have a hotline that provides information and referrals to community resources over the phone? Other services?)
In providing advocacy training, support, and education, WVPTI provides online, telephone, and in-person group and one-to-one trainings, support (for example, attending a school meeting with parents), and education. FSS-specific education would be jointly conducted by WVPTI and. R-FSS. There are some FSRG Outreach Department staff that are not WVPTI staff, and Ms. Haberbosch has this information. There is one scientific advisor, two educators, and an ordained minister. The scientific advisor has a DIPLs in math and biology and pre-DIPL in biology; she also has FSS and is German and fluent in English. Both educators have an MS. The educator has her MS in Rehabilitation Counseling, and the other has her MS Health Education and Promotion and has a daughter with severe FSS. The ordained minister has an MDiv and has been a mentor to a young person with FSS and has particular knowledge and understanding of FSS.
17. Does the FSRG’s Outreach Department have specific office hours? If so, what are they? Which services are offered 24/7?
The Outreach Department operates 9-5, but the Director rolls the line over to her house.
18. Are there additional ways that patient/family networking takes place besides through the online discussion group? If so, what are they? (for example, through a peer-to-peer networking service or in-person support group)
Yes, perhaps I was not clear on that point. Online networking is just one method.
19. Does the West Virginia Parent Training and Information Center provide services on a national basis through the FSRG? (Do they serve my state/country?) Is the West Virginia Parent Training and Information Center providing services under a subcontract with FSRG?
The Director of WVPTI is the director of FSRG's Outreach Department, as well. Since they have a similar mission, services through FSS are offered internationally. They also have MOUs with PTIs in many other states.
20. What pastoral care services are provided? How are they provided? (by phone, in-person, etc)
Pastoral services are offered via electronic means, telephone, and in person (under certain circumstances). Specific services are tailored to meet individual and family needs, but these may include: prayer, discussions about faith in the face of FSS, giving of the Sacraments, pastoral counselling, and discussions about faith and research.
21. Would you describe the telemedicine and e-medicine services further? Is it meant to be a one-time service? Is it an ongoing service? What sorts of emergencies is it intended for? (is someone always on-call?) Is the Physiologist-in-Chief a medical doctor?
Telemedicine and e-medicine services are offered in accordance with FSRG's IRB approval and continuing (weekly) review, the American Telemedicine Association's practice guidelines, and all applicable law. The services offered are consultative. They are meant to supplement, not replace, existing care that may be available. The Physiologist-in-Chief is a doctoral-level physiologist, not an MD. He is an expert on these conditions and has many years of clinical and research experience. Currently, we are in the final stages of drafting the first clinical guidelines for these conditions. I am his physiology research student and am always 'on-call' and contact him as needed.
22. How far does the Physiologist-in-Chief travel to provide emergency, diagnosis confirmation and second-opinion consultations in-person? (is it only provided in and near West Virginia?) What sorts of emergencies is this service intended for?
Consultations can be provided in any priority; 'emergency' simply refers to the priority in which they are addressed. This is particularly important in FSS. While patients may present with relatively common complaints, the natural history and management may differ considerably. Direct in-person travel will depend upon funding we receive.