1. Informations to AGS Family Conference

Dear families,

Thank you for being patient with us - we have been working hard to negotiate rates and find the most efficient, comfortable, and safe options for accomodations as possible. A hotel contract is finally in the works, and I plan to send out the hotel information next week.
People coming from out of town should plan to check into the hotel on Thursday afternoon. Friday will be spent in clinic, and Saturday will be spent hearing from and talking to experts. We will be done by 4 or 5pm on Saturday, April 30. Unfortunately, we have learned that Dr. Crow will be unable to join us this year in person, but we will arrange for him to join us for part of the conference from England by video. I will be sending out a more detailed agenda in the next few weeks.
In the meantime, now is a good time to contact your local physician to get a letter that describes the importance of coming to this clinic. A letter will be helpful in getting medicaid reimbursement for travel and lodging, if that's something your state provides. Below, I've included some information from one parent who has experience with getting medicaid reimbursement for this type of out-of-state clinic. Please let me know if I can help in any way.
If your child has Medicaid, it may cover at least part of the cost of the travel and lodging for the AGS clinic.   Every state has different rules, so you must contact your case worker and ask how to get pre-approval for out of state travel.   Do not take no for an answer--- the squeaky wheel gets the grease.   Very often there will
be a specific person at the state level that deals with out-of- state travel for medical care.  You need to find out their name and call them to get what is needed in your state for approval. In Michigan, Medicaid requires that you get a letter from a specialist stating  the following:  this child has Aicardi-Goutieres syndrome, that it is very rare, that there are not any specialists in the state that can give the special care needed for this childs' unique needs, and that it is recommended that the child travel to the Aicardi-Goutieres  clinic in Washington D.C. to get the special care that he/she needs.   This letter needs to be submitted along with regular Medicaid travel documents at least 2 months ahead of time.  Once approved, Medicaid will pay a certain rate for mileage, hotels, tolls, parking fees, and sometimes meals.  They can also pay for air fare, but usually only for one adult and one child.   Reimbursement rates might not cover total costs, but something is better than nothing. If you want to discuss this with a parent, then please call Donna Miller at 231-929-3484.
Thank you,
Johanna Loewenstein, MPH, MGC, CGC
Certified Genetic Counselor
Department of Neurology & Center for Genetic Medicine
Children's National Medical Center
111 Michigan Ave NW
Washington, DC 20010
Phone: 202-476-4975
Fax: 202-476-2864