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Links to Advocacy Groups

As you may know, the two major advocacy groups for mitochondrial disorders are MitoAction.org and UMDF.org. The following are but a few of the other groups that may be of interest and which can be found on the internet:

Chromosome Deletion Outreach, Inc. Mission is to provide support to parents of children born with rare chromosome disorders, gather and disseminate information and promote research and a positive community understanding of these disorders. www.chromodisorder.org

Families of Children Under Stress
For 25 years the mission of FOCUS has been to offer emotional, informational and physical support to families of children with disabilities or ongoing medical needs through a variety of programs, including providing respite care, summer camp and group meetings. www.focus-ga.org 

Mito Chat Room on Yahoo
For those affected by mitochondrial disease - a place to discuss, share and gain information and support. http://health.groups.yahoo.com/group/Mito

National Marfan Foundation
Dedicated to saving lives, and improving the quality of life for individuals and families affected by the Marfan syndrome and related disorders. www.marfan.org

National Tay-Sachs & Allied Diseases Association - NTSAD is dedicated to the treatment and prevention of Tay-Sachs, Canavan, and related diseases, and to provide information and support services to individuals and families affected by these diseases, as well as the public at large. www.ntsad.org

Parent to Parent of GA
P2P provides resources and support for parents of children with disabilities or special health needs. www.parcnttoparcntofga.org  

Trisomy 18 Support Foundation, Inc. Mission is to guide the search for a cure and treatments, to educate and support medical professionals, and to create a caring worldwide community for affected families. www.trisomy18support.org

 

Patient Advocacy

We believe that good medicine does not end with the consult. Unlike most practices and physicians, we don’t have the clock running for the little things. Our additional Care Assistance is designed to enable a physician to be available outside appointments when a request is for involvement that exceeds just a couple of minutes. Care Assistance services assist patients and families to access care and resources that exceed what can be accomplished within an appointment and for those services that can improve their quality of life.

Care Assistance is only available to active patients, seen at least once in the previous 12 months by VMP, in which a proper physician/patient relationship exists. The services may be reimbursable to you and may include:

  • Discussions or reports that may involve management, testing, and care issues;
  • Custom protocol letters for the family to have on hand;
  • Completion of requested paperwork ‐ such as disability paperwork, letters of medical necessity, school forms, letters for insurance companies or other agencies;
  • Discussions with others involved in your care;
  • Involved requests such as patient specific conferences

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Whom better to explain how this area of service changed a family's life than to post a letter from a mother who utilized this service:

 

"Raising a child with special needs has offered many opportunities to see the need for a patient advocate. With IEP’s, section 504 plans, homebound school etc., there was always the requirement for doctor recommendation and approval.  However, we’ve recently learned that the transition to adulthood offers equal or even greater challenges.

Dr. Kendall has provided outstanding medical care to our son for the past 3 ½ years and she has recently filled a critical need with her role as a patient advocate.

I am the mother of a 19 year old (almost 20) young man with a mitochondrial disease diagnosed via muscle biopsy in August 2006.  It wasn’t until the past year that we came to really understand the need for a doctor who would not only provide medical care, but would also be our child’s advocate, who understands his condition, how his body works and how this illness effects day to day living.  Along with the physical problems associated with his illness, our son also suffers from severe behavioral, cognitive, and learning problems. But, when he walks in a room, he looks like a relatively healthy 19 year old.

In May of 2008 (shortly after our son’s 18th birthday), we started the application process for social security disability and medicaid.  In June 2009, our son graduated from high school (not without a lot of assistance and support) and we began the transition to adulthood.  Our top priority and major concern was health insurance.  If our son was not a full time student, he was no longer covered under our family plan. 

In June 2009, after more than a year of waiting, answering questions, filling out forms and attending appointments, we were facing our second rejection from social security.  People (the doctors involved) simply do not understand the devastating effects of mitochondrial disease.   We realized we needed help.

Shortly before, we had learned that Dr. Kendall had opened Virtual Medical Practice and was offering consultation and patient advocacy services in addition to direct patient care. Within 2 weeks of requesting Dr. Kendall’s involvement (at very reasonable prices), we had a detailed letter from her explaining mitochondrial disease, our son’s symptoms and his limitations.  Within 3 months of that, we had an approval for SSI and Medicaid. A huge burden was lifted.

At the same time, we were also applying for our son to remain on our insurance as a disabled child. Again, a rejection. When we got Dr. Kendall involved, she again filled out paperwork, wrote a letter (or tailored her original letter), and within a month or so, another approval. So, within two months of applications, we had both private and public insurance. This was no small feat as our medical bills would be unaffordable without insurance. In addition, we had our son registered for four classes at the community college.  He was set up for failure which of course added to his frustration and exhaustion.

We can see how this assistance continues. For our local community college, we needed paperwork to qualify John for disability services. Again, Dr. Kendall quickly completed the required documents (my son’s disability counselor was shocked by the support!). And, we recently met with our local department of social services to obtain a case worker and learn about public services.  The case worker and psychiatrist reviewed Dr. Kendall’s documentation and we already have a verbal approval for services.

For those of you that suffer from mitochondrial disease or are a parent of a child with mitochondrial disease, you can relate to the fact that every day is a challenge.  Having a doctor that is truly an advocate has made a huge difference in our lives.  My son now takes one class, and works 8 to 10 hours per week.  That is the schedule that provides him the highest quality of life.   On Dr. Kendall’s website, she lists the service as “Patient Advocacy – assisting patients and families to access necessary care and resources to improve their quality of life”. Dr. Kendall has done just that for our child and our family and we are grateful."

PM

To check what other patients are saying about us, click here for our Testimonials page.

To schedule an appointment or inquire about services, please email us at info@virtualmdpractice.com and go to our Resources page for information that may be of interest.

VMP focuses on the diagnosis and management of children and adults with rare disorders utilizing state of the art technology and years of experience. With simple and cost effective technology, we provide excellence in specialized care to patients in often underserved areas.

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