Kaitlynn's Place

Many of us in Marion County have missed the absence of the Marion County Informer since it closed a few months ago. I am happy to announce the arrival of MarionCountyPRESS.net. The online news site will be run by Mr. Dean Wade, owner of Pine Belt PRESS and former WDAM-TV reporter, news anchor, and weather anchor.

Like the MCI, Marion County PRESS will focus exclusively on local news, weather, politics, sports, and community events. Mrs. Chloe Oliver will be a writer and marketer for the Marion County Press. Local entities that wish to advertise their business or service on the site through print and/or video can contact Chloe by email . Mrs. Fran Ginn will continue her "Adventures in Good Eating" community column. I, for one, am excited to once again have a unique and engaging online news portal for Columbia, Mississippi. 

I realize that I write a lot about the resources available (or lack there of) for special needs children and their families. However, I have long thought that one of the greatest challenges for the parent(s) of handicapped children is lack of resources, lack of available care and education, and lack of global support. These take a much heavier mental and physical toll on the parent than the child‘s actual disability ever thought of.   

A new study by the Texas A&M University Center on Disability and Development seems to give statistical data to my personal opinion. The study was published in Rehabilitation Psychology.

Seven Texas based focus groups were conducted with 40 parents of children with disabilities. The collected data was coded into themes. The four significant themes that serve as barriers to a positive parent wellbeing were:

1. Access to information and services
2. Financial barriers
3. School and community inclusion
4. Family support

Read more about the details of the study here.

On June 29th and June 30th, 2010 The Food and drug Administration (FDA) will hold a public hearing on the regulation of drugs, biologics, and devices for the treatment and diagnosis of rare diseases. The hearing will be held on both dates from 9 a.m. to 5 p.m. at 10903 New Hampshire Avenue, Building 31, Room 1503, Silver Spring, Maryland. There is not a charge to attend, but seating will be on a first-come basis. 

The FDA is seeking to acquire input from healthcare providers, academic researchers, patients, family of patients, patient advocates, pharmaceutical industry, and the healthcare industry to help carve the FDA’s future path related to rare diseases. All of these groups will be given an opportunity to relate their experience, concerns , and suggestions related to  the way the FDA regulates the scientific evaluation, marketing authorization, surveillance, etc.. of products for rare diseases.

The National Organization for Rare Disorders (NORD), one of the leading organizations dedicated to helping people with rare "orphan" diseases, announced that they will have a representative to speak at the meeting. If you would like to speak or submit a written comment via NORD, you can contact Diane Dorman @ ddorman@rarediseases.org

Otherwise, you can contact The FDA for questions about how to make an oral presentation or written submission here- Paras M. Patel, Food and Drug Administration, 10903 New Hampshire Avenue, Building 32, Room 5271, Silver Spring, MD 20993-0002; telephone: 301 796-8660; fax: 301 847 8621; OPDAR@fda.hhs.gov. You must register if you want to be heard! If you just want to attend, then you do not have to register.