Welcome To Kaitlynn's Place

Kaitlynn was born September 29th, 2004. We have seen neurology specialists from St. Louis to New Orleans since she was born. Unfortunately, we still do not have a definitive diagnosis for Kaitlynn. The best guess her doctors have to offer is mitochondrial disease.

Mitochondrial Medicine 2010

9:52 AM Posted In , , , Edit This 6 Comments »
This will be the United Mitochondrial Disease Foundation's (UMDF) 12th annual international mitochondrial medicine symposium. It will be held June 18th - 19th  in Scottsdale, Arizona, at the JW Marriott Camelback Inn Resort.

 The UMDF brings together clinical and science research fields such as: genetics, neurosciences, cardiology, cancer, diabetes, nephrology, hematology, pediatrics, biochemistry, etc.., all of which share a common interest in the mitochondria.

The conference provides those interested or affected by mitochondrial disease an opportunity to hear from some of the leading experts on the subject. It also provide an outlet to meet others that share your interest in mitochondrial disease. The conference is a great place to cultivate networks and exchange information.

The schedule has two or three choices per time slot.  Allowing attendees to pick one in each category helps to tailor the meeting to meet specific interests.

Friday Schedule:
7:00am Registration
8:00am Welcome and Managing Your symposium Experience
8:15am Clinical Trials in Mitochondrial Disease: Bringing Consensus to Treatment Confusion- by Dr. Gerald Vockley.
8:15am AACT and Adult Gathering
9:30am Break
10:00am Latest Concepts in Mitochondrial Disease- by Dr. Gerald Vockley.
10:00am  Child- IHP, 504 Plan and IEP- What’s the Difference?- by Donna Noble, Med.
11:15am Child- Palliative Care and You: Be Not Afraid- by Dr. Sarah Friebert.
11:15am Adult-Pain management in Adults with Mitochondrial Disease- by Dr. Steve Lobel.
12:30pm Lunch
2:00pm Teen Talk (informal round table)- by Dr. Amy Goldstein and Russell Saneto, DO, PhD.
2:00pm Clinical Autism/Mito- Special Mito/Autism Ask The Mito Doc Panel- by Dr. Bruce Cohen; Richard Haas, MB, Bchir; Dr. Sarah Spence; Dr. Roberto Tuchman, FAAN, FAAP; and Dr. Pauline Filipeck.
2:00pm Adult -Ask The Mito Doc Panel- by Dr. Sumit Parikh and Dr. Michio Harano.
2:00pm Child- GI issues and Dysmotility by Dr. Richard Boles.
3:00pm Adult SS Disability Process and Estate Planning by Beate A. Pohlig, Esq.
3:00pm Providing Nutrition Support: From Oral to Enteral and IV by Deborah Pfister, MS, RD, CNSD.
3:00pm Teens- Exercise and Nutrition by Joe Wise and Mark Tarnoplosky, MD, PhD, FRCP.
4:00pm Care Taker Workshop by Lynne A. Wolfe, MS, CRNP, BC; Larry Lynch, LCSW.     
4:00pm Fundraising to Support UMDF Mission
4:00pm Teens- Informal Social Gathering
6:00pm Cash Bar Reception
7:00pm Banquet Celebration, Awards Ceremony, and Entertainment

Saturday Schedule:
7:00am Breakfast
8:00am Clinical Autism/Mito- Primer on Autism by Geri Dawson PhD.
8:30 am Exercise - A Practical Approach for All Ages by mark Tarnopolsky, MD, PhD, FRCP.
8:30 am Recognizing and Overcoming Cognitive Issues in Mitochondrial Patients by Lisa A Young, PhD.
8:45am Clinical Autism/Mito primer on Mitochondrial Disease Dysfunction by Douglas C. Wallace, PhD.
9:30 am Clinical Autism/Mito Genetics of Autism and Mitochondrial Disorders by Dr. Matthew Slate and Robert Naviaux. 
9:30am Adult -Palliative Care and You: Be Not Afraid by Dr. Sarah Friebert.
9:30 am Child- Behavior Management and Education for the Mitochondrial Child by Chris Davidson, PhD.
11:00am Clinical Autism/Mito- Epilepsy in Autism and Mito Disease.
11:00am Blogging and Journaling as Therapy for Patients and Families by Suzanne Perryman.      
11:00am Holistic Approach to Manage Mito by Dr. Amy Goldstein; Amanda Kilinger, MT-BC Chris Williams, DC; and Linda Shelton.
12:00pm Clinical Autsim /Mito- Screening, Treatment,  and Evaluation of Mito by Dr. Bruce Cohen and Richard Haas, MB.
2:30pm Hot Topics in Mitochondrial Disease
2:30pm Clinical Autism/Mito- Neuroinflammation in Autism and Epigenetics in Autism- by Dr. Carlos Pardo and Dr. Carolyn Schanen.
4:00pm UMDF National Updates and Closing
4:30pm Clinical Autism/Mito- Clinical Panel Discussion. 

“The Doctor is In” program gives families a 15 minute informal opportunity to meet one on one with the specialists in attendance. The questions asked during the “Ask the Mito Doc Panel” are pulled straight from the attendees questions. So, be sure to mail your question in with your registration form.

The JW Marriot Camelback Inn Resort , in Scottsdale, Arizona is offering special rates of $149.00
for attendees.  The cost of the Mitochondrial Medicine 2010 conference is $225.00 for UMDF Energy members or $300.00 for non-members.

To inquire about the scholarships available for those with financial hardships, call 1-888-317-UMDF or visit the UMDF web site here.

6 comments:

Chris Stonecipher said...

This conference is important to all interested in Mitrochondrial Medicine. It will be held in Scottsdale, Arizona.

Terri said...

Found your blog off of facebook UMDF group. Love it. Have a 3 1/2 yr. old girl who is also puzzling Dr.s everywhere! Going to Atlanta to see the best mito/metabolic geneticist to date.

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