A group within the ALS community compiled a list of actions requested to be taken by the ALS Association. While some are outside the scope of this petition, many are not, and I felt it important to share with you a request of this magnitude. It takes every single one of us to be informed, active and holding the organization which serves our needs accountable. Listed below is the final text version of the document I emailed to Barbara Newhouse yesterday. For your use and reference, here is the link to access the PDF document: https://drive.google.com/file/d/0B0yxxVCJLk5lZVZ1RGhfY09VTEE/view Patient Care and Support 1. Provide free flu and pneumonia vaccinations for ALS patients, caretakers and immediate family members. 2. Create, by chapter, rapid response ALS caretaker training teams. 3. Develop and implement a program to educate tracheostomy candidates, as well as their respective families and caretakers, on the details of surgery, recovery and care required for trached patients. 4. Develop and sponsor ALS caretaker training and certification programs. 5. Create a virtual catalog, by chapter, of the loan closet inventory, with regularly updated information and online access to the community. 6. Implement virtual support groups nationwide, and ensure there are also on-location support groups serving every area. 7. Ensure each chapter has expert and regularly updated knowledge of all federal, state and local health care resources and benefits potentially available to ALS patients. Assign dedicated staff to educate ALS patients on possible benefits, and guide them through the process of attempting to acquire them. 8. Provide free legal assistance, including document preparation and notarization. 9. Provide free patient financial planning assistance. 10. Address the issue of depression, stress and anxiety in ALS patients, particularly for those who are bed bound. Establish a means for therapists and psychologists to work with patients remotely via webcam or email or in person with a home visit. 11. Create manned toll-free help line. 12. Determine way to provide in home physician services, particularly to immobile patients. 13. Provide home care grants in every chapter. 14. Create technical and equipment expert position in every chapter to assist ALS patients with issues and questions they may have, as well as ensuring patient is utilizing technology to its greatest potential. 15. Provide wheelchair accessible transportation for doctor appointments. 16. Publish an ALS booklet for PALS, CALS and healthcare providers with ALS specific patient care information, tips and checklists. This would be utilized in hospitals, hospice, nursing homes and assisted living places and include information on feeding tubes, trach, emergency room, general precautions and inpatient care while in the hospital. 17. Work closely with ALS clinics, and ensure they have educational documentation on hand, as well as encouraging newly diagnosed to register with ALSA immediately. 18. Train and provide an ALSA patient advocate to attend doctor appointments and home health agency intake meetings with ALS patients, if requested. 19. Create document ALSA case manager provides to the newly diagnosed of every service they and their chapter can provide. 20. Ensure ALSA case manager makes one-on-one contact with each registered ALS patient in their coverage area by means of telephone, in person, email, etc…at least once per month. 21. Ensure all ALSA patient support staff nationwide are educated on end of life options in each of their respective areas, including right to die laws, hospice, brain and spinal donations to research, etc. They should be prepared to discuss these matters, if requested. 22. Establish a network of volunteers who are able to assist ALS patients in their respective areas. Background checks may be an issue here. 23. Provide CPR training and certification courses. 24. Create a chapter center of excellence, and model each and every chapter after it. There is a need and demand for consistency across chapters. Patients and families should be able to expect and hear the same services and level of care and support exists across all chapters. 25. Support the needs of ALS patients who have children, including providing counseling, activities and legal guidance for family court matters which may arise. 26. Provide resources to ALS patients to assist them in the construction of an emergency response and rescue plan in the event of an emergency, i.e. fire, earthquake, loss of power, inclement weather, etc.… 27. Make available a list, by chapter, of homeopathic doctors who naturally treat ALS patients in each respective territory. 28. Partner with Habitat for Humanity to provide accessible modifications to the homes of ALS patients. 29. Develop a simple method, preferably online, for ALS patients to connect with other ALS patients in their vicinity. This would be voluntary. Research 1. Provide a public financial accounting of the funds earmarked for research, including project name, location, amount allocated, amount paid to date, start date and completion date. 2. Provide public updates on the progress and outcomes of ALSA research grants. 3. Publicly support FDA approval of ALS patient access to Brainstorm’s treatment NurOwn. 4. Create social media and text method of communicating new clinical trial openings 5. Partner with local gene sequencing providers to examine and research genetic abnormalities. 6. Provide a detailed ALS Registry accounting of how last year's $10,000,000 was spent. Add transparency to ALS Registry project, including clear data on self-enrollment statistics relative to ALSA clinic patient counts. 7. Spend funds on relevant, promising projects. Advocacy 1. Provide public support for the Right to Try movement. 2. Continue funding CMA to assist in their effort to correct rampant issues encountered by ALS patients when attempting to access their existing Medicare home health services benefits. 3. Develop a partnership with organizations who possess a vested interest in the expansion of Medicare home health services benefits for those their organizations serve. Together, create and execute a plan to expand coverage to be equal to or greater than those allowed for by Medicaid. Of particular importance is the allowance of two eight-hour nursing shifts per day for trached patients, as well as reduced out-of-pocket prescription costs. 4. Follow through on ending the SSDI waiting period. 5. Support efforts to ensure all public places nationwide are wheelchair accessible, including entryways and bathrooms. Provide a method of reporting non-compliant businesses. 6. Provide priority, allocated time during Listening Tours to hear from those who have participated in Advocacy Day or who have corresponded with legislators at the request of ALSA. All parties with a tie to the ALS community must be welcome to attend. 7. Create and air educational television commercial. 8. Require continuing education of all medical personnel on ALS, and request the Department of Health to enforce the mandate. 9. Advocate for compensation of caretakers, who are related or are friends of the ALS patient they care for, for their time spent caring for an ALS patient. 10. Publicly support every initiative giving ALS patients who need a communication device immediate access to such, preferably at zero cost. Organizational 1. Foster environment of transparency. 2. Conduct surveys of the ALS community on a quarterly basis, and issue timely, public publishing of survey results. We are waiting for the June 2016 survey results. 3. Hold regularly scheduled listening tours for anyone with a tie to the ALS invited to attend, and provide timely, public follow-up to issues raised. We are waiting for the August 2016 results. 4. Establish priorities and funding allocations based on surveys and listening tours. 5. Update website with current and relevant information, including updated links where necessary. 6. Develop synergistic relationships with other ALS organizations to better serve the ALS community. 7. Maintain a prioritized, publicly available list of projects in the pipeline for funding considerations, and re-prioritize as necessary. 8. Analyze the budgetary spending ratio of fundraising as compared to patient services and research. Determine if it falls within ethical, acceptable practices. 9. Develop a process of soliciting information and feedback from the ALS community to ensure the voices of those the ALS Association serves are being heard. This information and feedback should be utilized in establishing objectives and allocating funds.