WE NEED YOUR HELP IN KEEPING FUNDING FOR TUBEROUS SCLEROSIS COMPLEX!
You may have heard in the news of pending across-the-board spending cuts in federal programs known as sequestration. If this is allowed to happen, it will have devastating implications to our ability to find a cure for tuberous sclerosis complex (TSC). We need your help.
What is sequestration? As a result of the debt ceiling debate and subsequent approval of the Budget Control Act of 2011, an 8.4 percent cut will be applied to all federal programs, including many that are critical to research into a cure for TSC. Such cuts will greatly impair medical and scientific research; public health, and the training of physicians and other health care providers. Specifically, these cuts have a devastating impact on the programs and agencies we care most about, including the National Institutes of Health (NIH) and the Tuberous Sclerosis Complex Research Program (TSCRP) at the Department of Defense (DoD).
FasterCures, an organization dedicated to accelerating the progress of discovery and development of new medical solutions for deadly and debilitating disease, outlines what might happen to research at NIH should sequestration take place on their recent blog posting found here.
“There is chilling evidence of what we can expect to happen to medical research at NIH should sequestration take place:
• NIH would issue about 700 fewer grants to medical researchers in Fiscal Year 2013 which means 700 fewer opportunities to find medical treatments and cures;
• The total cut to NIH would be $2.4 billion;
• The National Cancer Institute alone would be cut by $396 million;
• The National Center for Advancing Translation Sciences would lose $44,879; and
• All 50 States would be expected to suffer from an across-the-board cut.
Cuts to NIH will result in not only job loss (NIH currently supports approximately 432,000 nationwide), but also a reduction in medical innovation.”
Without bipartisan action in Washington, these cuts will take effect by law on January 2, 2013. Members of Congress know what they need to do to prevent these cuts. They must find a way to work together and make tough decisions. It’s time to let lawmakers know that balancing the budget takes a balanced approach—they can’t and shouldn’t do it by cutting essential medical research programs!
Your Senators and Representatives need to hear from you NOW while they are back in their home states for the August Summer Recess. They have heard from many experts and more than 3,000 organizations on sequestration. But it’s not enough. They need to hear from the people that matter most—their constituents.
Please take the time to meet with or call your Members of Congress this August to urge them to stop sequestration. Below is a sample message that can be sent to your elected officials emphasizing the importance of taking action soon to prevent these devastating cuts. You can find your Senators at www.senate.gov, and your Congressional District and Representative can be found at http://www.house.gov/representatives/find/. A sample email is included below. Please contact Katie Smith at ksmith@tsalliance.org with any questions. Thank you for your timely action to this request.
SAMPLE EMAIL
Dear Representative/Senator
As a parent of a child/individual diagnosed with tuberous sclerosis complex (TSC), I am writing to urge you to work with your colleagues in a bipartisan manner to take action to avoid the pending “sequestration” across-the-board spending cuts.
TSC is a genetic disorder that causes tumor growth in the brain, heart, lungs or virtually any other organ system in the human body. [TELL PERSONAL STORY HERE...for example, "my child/I was diagnosed with TSC....]
Significant advances in our understanding of TSC have resulted due to research funded by the National Institutes of Health (NIH) and the Tuberous Sclerosis Complex Research Program (TSCRP) at the Department of Defense (DoD). However, much more needs to be done to get us closer to developing promising new treatments — and ultimately a cure — for TSC. If Congress takes no action to prevent sequestration, an estimated 8.4 percent cut will occur to the budgets of NIH and the TSCRP, which will greatly delay and diminish our prospects for getting closer to a cure. In short, promising scientific ideas that are being proposed by the TSC scientific community will not get funded.
Please work with your colleagues in Congress to develop a bipartisan alternative to sequestration to takes a balanced approach to deficit reduction. Such approach should take into consideration the importance of the investments we need to make to further scientific research and ensure a prosperous and healthy America!
Sincerely,
Your Name
Your Address
Your City/State/Zip Code
Parent to Parent introduces Passages
If you have had a child pass away, or you know a family who had a son or
daughter, any age, who had special needs or disabilities and died, this is a
safe new place where you can gather online.
Parent to Parent of Colorado (P2P) has always said that we serve families with
sons and daughters with special needs from birth through life. Because your
child lives on in your heart and hopes and dreams we would like to invite you to
share those with other parents in this same situation. The loss of our children
can be sad and painful and yet we still carry good memories of them.
The Parent to Parent Passages listserv will be a place to share your happy and
sad, positive and painful, memories, thoughts and dreams. We hope many of our
Parent to Parent parents who have suffered the loss of their child or children,
young or older, at any age, will have a place to talk with other parents in the
same position, offer mutual support and share resources.
Robin Bolduc, founding director of P2P, is the parent of 7 children. Her son
Brady, age 12 with multiple disabilities, passed away in September of 2009.
Renee Walbert, matching coordinator of P2P, is the parent of 4 children, 3
surviving, two with multiple disabilities. Her daughter Rachel was born and died
after 45 minutes in November of 1985. Susan Blumberg, founding member of P2P,
current board member, is the parent of two children. Aviva, now 15, was a 24
week preemie, and has multiple disabilities. Susan is a child and family
therapist who specializes in supporting families of children with special
needs.
Robin, Renee and Susan will facilitate the listserv, answer questions, and share
resources. The content and direction of the listserv will be determined by the
needs of the parents who participate. You may join at any time, leave, come
back, and share as much or as little as you choose.
Everyone’s journey of grief is unique. Some people may choose to join as their
children are dying and others may join years after their child’s passing.
If you would like to join us and you are already a member of P2P, please send a
note to Renee, renee@p2p-co.org. If you are not currently a member of P2P,
please go to www.p2p-co.org and click on “Join P2P” and choose the Passages
Listserv in the registration form.
Parent to Parent of Colorado
ILRU is partnering with the National Rehabilitation Hospital (NRH) on the RRTC on Spinal Cord Injury
We’re just getting started but already you can view materials on the project website: www.sci-health.org/ . You will find a brief video on “how to do pressure reliefs,” as well as our consumer fact sheets, which provide need-to-know information about selected secondary conditions such as osteoporosis and diabetes. There is a link to send us feedback and suggestions and to become a subscriber to receive e-mail alerts whenever new information is posted to the site. We hope you will check out the site and let us know what you think.
The Rehabilitation Research and Training Center (RRTC) on Spinal Cord Injury is a five-year project, funded by the National Institute on Disability and Rehabilitation Research (NIDRR). Its focus is the prevention and management of secondary conditions among individuals with SCI, particularly pressure sores, cardiovascular disease, and obesity.
The overall mission of the Center is to improve the quality of life for people with SCI through greater health. To do this, we have two broad goals. First, we will conduct several important clinical research studies in order to discover new knowledge and information about how individuals with SCI can prevent secondary conditions. Second, the Center will be focused on making sure that this new knowledge and information is being received directly by the members of the SCI community. Our outreach efforts will specifically target those who are underserved, such as individuals who are low-income or who do not speak English fluently. Additionally, the Center will work to further educate doctors who do not specialize in SCI, such as primary care physicians.
Please visit the website, www.sci-health.org/ , let us know what you think, use the site to sign up for e-mail alerts about new items posted or opportunities to sign up for one of the research projects (if you are in the DC or Miami area), and then stay tuned for updates on the projects and news you can use.
New and Updated Resource Guides with information for families who have children with disabilities
Parent to Parent Updated Resource Guides.pdf
Tuition at School to Treat Learning Disabilities is Deductible Medical Expense
PLR 200521003
The IRS has privately ruled that tuition for a child diagnosed with multiple learning disabilities at a school designed to assist students in overcoming their disabilities and developing appropriate social and educational skills was a deductible medical expense.
RIA observation: Treating a child’s learning disabilities can place a heavy financial burden on parents. As the new ruling illustrates, the tax law may help by allowing a deduction for the cost of educating such a child. However, like other deductible medical expenses, this cost is deductible only to the extent that medical expenses for the year cumulatively exceed 7.5% of the taxpayer’s adjusted gross income.
Background: Medical care includes the cost of attending a special school designed to compensate for or overcome a physical handicap, in order to qualify the individual for future normal education or for normal living. This includes a school for the teaching of braille or lip reading. The principal reason for attending must be the special resources for alleviating the handicap. The cost of tuition for ordinary education that is incidental to the special services provided at the school, and the cost of meals and lodging supplied by the school, also is included as a medical expense. (Reg. § 1.213-1(e)(1)(v)(a)) The distinguishing characteristic of a special school is the substantive content of its curriculum, which may include some ordinary education, but only if the ordinary education is incidental to the school’s primary purpose of enabling students to compensate for or overcome a handicap. (Rev Rul 70-285, 1970-1 CB 52)
Facts: A taxpayer we’ll call Patricia has a child diagnosed with several developmental disorders. A neuropsychologist concluded that the child needed an educational environment that is more therapeutic and specialized to his disabilities than he was receiving in the special education program at the local public school. As a result, Patricia enrolled her child in a special school at the beginning of tenth grade. Students are enrolled in the school only if they do not have strong visual/spatial abilities, which in turn severely limits their ability to process information in typical classroom settings. However, the students enrolled in the school generally do have strong auditory processing strengths. The school focuses on these strengths and its techniques do not depend on presenting information in a visual manner. The school employs a wide variety of professionals such as special-ed teachers and mental health specialists.
The school’s program is designed to assist its students in overcoming their disabilities by using techniques that help them develop appropriate social and educational skills that will assist them in their pursuit of higher education.
Tuition is a medical expense. IRS ruled that the school uses special teaching techniques to assist its students in overcoming their condition and that these techniques along with the care of other staff professionals are the principal reasons for Patricia’s enrolling her child at the school. The school is a “special school” within the meaning of Reg. § 1.213-1(e)(1)(v)(a) and Patricia’s expenses for her child’s tuition at the school in those years he is diagnosed as having a medical condition that handicaps his ability to learn are deductible under Code Sec. 213(a).
RIA observation: The Tax Court has held and IRS has privately ruled that, where a school attended by a student with a medical problem doesn’t qualify as a special school because the ordinary education isn’t incidental to the special services provided, the costs of the special program or special treatment (but not the entire tuition) may still be a deductible medical expense.
Colorado Autism Commision
I am one of 24 CO citizens appointed by Gov. Ritter to the Colorado Autism Commission. Our web site is: www.coloradoautismcommission.org/. Our mission is to develop a 10 year strategic plan for all CO citizens affected by autism. We are currently gathering public testimony so we can more clearly understand and represent all persons in order to fulfill our task. Testimony can be made in person at one of the public hearings or can be made online.
Thank you,
Kathy Lescynski (Parent C.N.A.)
The Rental Homeowner Access Modification Program (RHAMP)
This program offers real help in the form of wheelchair ramps, porch railings, grab bars, widened doors, raised toilets, and other home modifications that allow for greater independence. Every person, every home, and every need will be different. RHAMP can help assess the mobility or safety need, and develop a plan for the correct modifications.
The Process: RHAMP accepts applications from individuals as well as referrals from agencies and organizations whose clients need help.
To Qualify:
- You must be a person with a disability and live in the City and County of Denver.
- You must rent or own the property which is to be modified.
- You must meet the income qualification requirements.
To find out if you qualify, please call Dawn Russell at 303.733.9324.
