The following letter is from Dr. Jones.
November 23, 2013
My update for the community is overdue. I’m happy to report that my leg finally is healing well, and that the rather large basal cell carcinoma on my face has been successfully removed. I’m now awaiting cataract surgery, and very soon will be ready to run marathons again! (well, maybe only a half-marathon…)
The need to take care of these matters prevented me from presenting at the ILADS conference in San Diego this year, but I’m delighted that I had a second opportunity to share important information as a speaker at the recent conference on PANDAS/PANS in Providence on November 9-10.
Dr. Jeanne Hubbuch and I presented on the role of Lyme disease in these disorders. I am proud and humbled to have shared the podium with some of the leading researchers in the field, including Dr. Madeleine Cunningham and Dr.Susan Swedo. I have become passionate about the potential impact of infection-induced autoimmune encephalopathy on many Lyme sufferers, especially our children, triggering a range of neuropsychiatric symptoms. As Madeleine Cunningham has said, work of this nature has the capacity to revolutionize how we think of psychiatric illness!
I also am delighted to report that, because of your support, I have continued to be able to maintain my office and clinical practice, despite the need to cut back my hours. This has allowed me to investigate these disorders, as well as to treat the children. The monitoring of my practice is scheduled to end in March, 2014. Happily, no infractions have been reported by the monitor. The monitoring requirement been very stressful for my office, however, with preparation for the monthly visits over the past four years taking hours of time and energy. I am grateful to my colleagues for their establishment of a fund to assist with the very high monitorfees.
In my previous updates, I have explained the several factors which have resulted in a reduction in my income, including the medical procedures that I have needed to have done, and highly complex pediatric cases that require lengthier appointments and treatment planning. As a result, I see fewer patients on many days, and this situation is likely to be ongoing. After a careful assessment of our financial viability going forward, I estimate a revenue shortfall of $25,000 per month. In order to keep the practice open, I will require continued financial support, which you have been providing so generously over the past several, very challenging years.
It pains me deeply to have to reach out to you on such a frequent basis, when you already have been so generous. But I have taken to heart your many letters, phone calls and other expressions of support, including the requests that I keep the community informed and allow you to participate in the decision to keep my office open. My hope for a long-term solution is the creation of a not-for-profit organization that will be dedicated to research and the treatment of these complex diseases, so that your children are able to receive the medical care they require.
Under these circumstances, if you would like to help by making another donation, please send it as soon as possible because, once again, our bills are due. If you are in a position to donate on a monthly basis, as some of you do already, please indicate your commitment to do so when you make your donation, or send us a reply email stating “monthly donor” in the subject line. In future letters, I will keep you informed about my financial situation and let you know when and if additional funds are no longer needed.
Donations may be sent to me in one of two ways:
Option #1: Checks may be sent to the following address: – be sure to note “gift” in the memo field:
Charles Ray Jones, M.D.
111 Park Street – 1st Floor
New Haven, CT 06511
(Note “gift” in the memo field)
Option #2: Paypal: Donations may be made online through a link which is available on the Facebook page for the Children’s Lyme Disease Network, which goes directly to my Paypal account. You must have access to Facebook in order to utilize this link: https://www.facebook.com/childrenslymenetwork.
Again, thank you for all of the caring and support you have extended to me and to my office staff over these past several years. I wish you a very happy Thanksgiving, and look forward to hearing from you as soon as possible!
Charles Ray Jones, M.D.