Melanie is a creative and uniquely spirited individual who embodies everything that MarbleRoad is trying to accomplish.

On September 18, 2008, partially paralyzed, Melanie was diagnosed with Transverse Myelitis (TM), a rare and debilitating neurological disorder. A former nationally presented multimedia choreographer/dancer; artistic director of Junction Dance Theatre; and senior copywriter, Melanie turned to visual art, blogging, and one-of-a-kind cane and accessory fashion designing (under the name neurochic), after becoming sick getting, getting fired, and becoming physically and cognitively disabled as a result of the TM. Soon, related autoimmune-neurological disorders continued to emerge, ruling her body and mind, including Multiple Sclerosis (MS), Encephalitis, and Complex Regional Pain Syndrome (CRPS) or Reflex Sympathetic Dystrophy.

The CRPS is a chronic neurological syndrome characterized by severe burning pain, pathological chances in the bone and skin, excessive sweating, tissue swelling, and extreme sensitivity to touch. Ketamine, a dissociative anesthetic, is being used in the treatment of CRPS with great success. The theory of ketamine use in CRPS/RSD is primarily advanced by neurologist Dr. Robert J. Schwartzman of Drexel University College of Medicine in Philadelphia, Melanie’s doctor. The hypothesis is that ketamine blocks NMDA receptors which might reboot aberrant brain activity. Treatment in the US generally consists of a low dose subanesethesia ketamine infusion of between 10–90 mg per hour over several treatment days, this can be delivered as an outpatient procedure.

Ketamine treatments pretty much knock Melanie out for several days, and so between flare ups of the CRPS and the ketamine treatments, Melanie has brief, limited periods of time where she feels “normal” enough to work, hang out with friends/family, etc.

When I caught up with Melanie, she was excited about several of her current projects, including neurochic; participating in The Flammable Heart Exhibition; and femme: a group show at the James Oliver Gallery in Philadelphia. The latter, which opened Saturday, June 18 and runs through Aug. 20, is an exploration of femininity (or lack thereof), featuring a mixed media exhibition that includes paintings, photography, sculpture, video art, glass and installation, all exploring the term “femme”.

Her cats, Max and Leo, offered me some brotherly love (Leo in particular) as we flipped through her massive portfolio: mixed media work, primarily watercolor, pen & ink; all of which helped to illustrate her story—

Friday, July 29, 2011 was Melanie’s 36th birthday. Even in chronic pain and on large quantities of medication, Melanie is still blooming with creativity, and the drive and ambition of the non-profit founder and ceo she once was. Her kitties fill a void of what was once a rich social network that included a husband, family, friends and colleagues. Melanie’s mom, Maureen, who now also has Power of Attorney over Melanie’s finances and rising medical costs, had just been by to help clean and straighten up the apartment. And the work we went through was accessorized by gauze, medical tape, latex gloves, Lidoderm (lidocaine transdermal), and even Melanie’s own blood (with a protective layer of acrylic coating, of course).

For most of Melanie’s early to mid thirties, she has had to both adjust to her own shifting realities and identity, and had to grow as an advocate and activist. She shared with me videos from her days with Junction Dance Theatre, when she was able to gracefully dance and leap across a stage in front of hundreds of people. And she shared with me stories about how Aetna refused to pay for her intravenous immunoglobulin (IVIG) treatment and so she has had to go as long as 3-6 months without it… For neurological and autoimmune diseases 2 grams per kilogram of body weight is implemented for three to six months over a five day course once a month. Then maintenance therapy of 100 to 400 mg/kg of body weight every 3 to 4 weeks follows, but the cost is prohibitive, especially when your health insurance refuses to pay, at well over $50/g. ($10,000 for a 100 kg (220 lbs) person at 2g/kg). Melanie currently has some coverage from Medicare, Social Security Disability Insurance (SSDI), and Mutual of Omaha; but she still has significant need of assistance due to high co-pays, co-insurance, and deductibles.

Melanie gives hope and inspiration to everyone she crosses paths with, and to the many readers and subscribers to her award winning blog. I’m glad to have had the opportunity to meet and talk with Melanie, and I look forward to spending more time with her in the future. I am ecstatic that Melanie has agreed to participate in The Flammable Heart Exhibition; below are a few selections of her work that we will be exhibiting:

Please join us at the exhibition and support Melanie, and the many others who are dealing with complex illnesses every day; rare, chronic, debilitating, disabling, and life-threatening diseases and disorders that wont knock them off their feet… because their hearts are on fire.

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MarbleRoad is a non-profit, 501(c)(3) public charity whose mission is to connect people who have complex illnesses with the resources they need to help them improve their lives. MarbleRoad provides financial assistance and support for people who have been impacted by a rare disease diagnosis and/or who are patients of community health centers in need of specialty care services. To raise funds, one of MarbleRoad’s primary activities is the IndieMatch campaign, which partners with independent artists and musicians in philanthropic opportunities, including as many as three art exhibitions/sales per year by artists and of work that have been influenced by a health care experience.

But there’s more. America has just decided that we won’t let citizens hit by catastrophic illness wither away out of sight. We won’t tolerate breadlines and homeless shelters for people who need appendix surgery when they find themselves in between jobs. We decided that such indifference is not American, and for such a decision, we should be right proud of ourselves. So can we afford to offer such a benefit to our citizens? Perhaps not. Is Obama fibbing when he says all this can be done fairly cheaply? Almost certainly he is. We can hope that having a healthier working force will lead to increased worker productivity, which in turn, will decrease budget deficits. And yes, America enjoyed a Clinton-era budget surplus after the dark, recession-ridden years of Bush Sr, but there’s no guarantees we’ll see that again. Honestly, my guess is that we younger people will get 70 cents for every dollar we put into these dubious national kitties, and probably less. Of course I’m not pleased, but I don’t want to live in a country that lets its citizens just go off in a corner and die. So with apologizes to Guns ‘n Roses, this is not “the Jungle,” it’s America, and I’d prefer to remain proud of it, even if it means less money in my pocket.

Danny Doyle

562 338 1374

Current law prevents many people who receive Supplemental Security Income from accepting research compensation because it makes them ineligible to receive government medical benefits. This penalty stops significant numbers of people with rare diseases from participating in clinical studies.

The 2009 legislation is supported by over 100 patient support and advocacy groups, including the Children’s Rare Disease Network. A letter sent to Representatives Markey and Stearns reads, in part:

“The undersigned organizations, representing millions of Americans with rare and genetic conditions, strongly support H.R. 2866, the Improving Access to Clinical Trials Act of 2009. We appreciate your efforts to remove the regulatory barrier that prevents Social Security beneficiaries from participating in clinical trials that provide compensation. The fear of losing Medicaid coverage is a strong disincentive for Social Security beneficiaries to participate in these clinical trials.

This problem is a barrier for people who wish to participate in clinical trials. For example, a high percentage of people with cystic fibrosis (CF) are needed to enroll in the large number of CF clinical trials in the pipeline, but many CF patients who are on Social Security cannot participate
because of this regulation. With the efforts to develop new therapies to treat more disease, it also could impact 30 million Americans affected by one of the nearly 7000 known rare and genetic conditions.”

Please see http://www.govtrack.us/congress/bill.xpd?bill=h111-2866 for current status of the legislation and a list of current co-sponsors. If you feel you can, contact your representatives and senators and let them know you support this bill. Thank those who have already signed on and encourage those who have not yet signed on to do so.

Their telephone numbers can be found at:

http://www.usa.gov/Contact/Elected.shtml.

Thank you for your support!
Children’s Rare Disease Network