Nova Southeastern Klimas Update Letter

[sparklehoof]

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[wigglethemouse]

Did anyone read the holiday update from novasoutheastern about ME/CFS Research Funding in men and post menopausal women?

Can you post a copy of the update @sparklehoof ?

 

[sparklehoof]

INIM Highlights and Funding Opportunities
2018 has proven to be an exciting year for the INIM with real progress in our efforts to find a cure for ME/CFS and GWI. The INIM has been successful in receiving grant funding for our GWI efforts though ME/CFS support continues to be sparse. As you read the highlights of our success in 2018, we ask you to reflect on what is important to you. If any of the below causes speaks to your heart, we ask you to please support our efforts and donate to the INIM.
Clinical Care
Our INIM provider’s continue to impress as they eagerly take on new approaches and modalities in diagnosing and managing these complex neuro-inflammatory disorders.
Dr. Maria Vera successfully passed the board certification in both Integrative Medicine and Functional Medicine this past year... an impressive and robust accomplishment. Dr. Irma Rey has been elected President of the American Academy of Environmental Medicine for the 2018-2019 year, and is implementing an Environmental Medicine Fellowship within the INIM. Irina Rozenfeld, ARNP, graduated from the Integrative Medicine Program with a Master of Science in Health Sciences degree from George Washington University School of Medicine & Health Sciences and is completing her Doctorate in Nursing Practice at the University of North Florida. Violetta Renesca, ARNP, our Veterans Affairs Liaison, is finishing her Doctorate in Nursing Practice at the University of North Florida. Dr. Alison Bested is the Medical Director of the INIM Clinic and successfully passed the board certification in Integrative Medicine this past year.
Using these various modalities, our clinic provides comprehensive care to our patients which has catapulted the INIM Clinic as the premiere destination for treatment of ME/CFS, GWI and other complex neuro-inflammatory disorders throughout the globe.
Many of you have received the much-needed help from our incredible providers. If you are one of the many grateful patients, wanting to give back to the INIM, we ask you to donate to our “Grateful Patient” campaign. These funds will cover the cost of a clinical visit for the patients unable to afford our services. For more information on donating, please visit www.givecampus.com/ehkupk

Research
Gulf War Illness (GWI)
Dr. Nancy Klimas has carried the research vision in the Institute for Neuro-Immune Medicine and has brought together a team of highly qualified researchers at Nova Southeastern University.
Patients with GWI have seen the human studies that challenged patients with exercise and blood samples before, during, and after – 8 times in 4 hours, then again the next day - turn into a model using more than 5,000,000 bits of data per subject!
A super computer approach and our brilliant computational scientists modeled the biology of GWI and found drugs or nutraceuticals that affected the right, newly identified treatment targets. Then hundreds of thousands of treatments in combinations and time sequences were run through a super computer platform called Watson. The computer system created a mathematical model which would “reboot” the homeostatic imbalance found in GWI patients’ immune, endocrine and brain signaling neurotransmitters systems using the treatment targets. This information resulted in the formulation of a workable clinical trial to test in animals initially.
The trial was successfully completed in the animal model, and now, in 2018 the first human GWI clinical trial is underway using this method! We are funded to move this human clinical trial through phase 2, and extend the work to other ME/CFS subgroups discovered in the modeling work.
This work is federally funded through the Veteran’s Affairs and the Department of Defense, with a recent 8.5 million dollar grant from the Army to help this and other biologically based models move through phase 1 and phase 2 trials

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
In ME/CFS we have completed all of the work needed to progress to human trials, thanks to pre-clinical NIH and VA funding.
We have established 3 models that require different clinical approaches – post-menopausal women model differently than pre-menopausal women, and men model differently than women.
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1) Thanks to support from the Gateway Institute for Brain Research we will begin the fully funded post-menopausal women’s study as quick as we can roll through the Institutional Review Board and FDA processes currently in progress.
2) Thanks to a fundraising campaign for the men’s study we have about half of the funding needed, and will be getting that study off the ground as soon as the IRB and FDA processes are complete. We only have enough money to get half the needed study volunteers through, and rely on you to help us fundraise to complete this study.
3) The biggest challenge is the pre-menopausal women phase 1 trial, which we are starting from zero and will rely on a fundraising campaign starting in the spring of 2019 to move forward with a phase 1 study as soon as we have about half of the funding in the donation account.
So think about giving generously to our “Reboot Campaign” rebooting homeostasis in individuals from “sick” to “well”. While the total funding needed to complete all of the above research projects is lot ( think one million), your individual contribution, no matter the size, takes us one-step closer to getting more phase 1 clinical trials up and running.
Animal Modeling in ME/CFS
Due to the generosity of Kathy and Ron Assaf, who graciously hosted a fundraiser in their beautiful home, we have a starter fund to establish the animal model for ME/CFS as we currently do not have one in place. This model is progressing nicely; particularly as creating an animal model is technically difficult. We must design a model that accurately mimics the inciting infection or exposure in the mouse, and also add in gender, which plays a large role in the effects of the illness in ME/CFS. The complexity of the needed mouse model is the reason that we are 30 years into this work and we still do not have the necessary ME/CFS mouse model!
We Need Your Help.
With the appropriate funding for the ME/CFS animal model, we could test our proposed treatments very quickly and then move to human trials for the treatments that truly work - ultimately a better way to go.
With your small contributions, of just $1.50 per day, you could cover the necessary costs for a mouse in our study - that’s less than a cup of coffee!
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What the INIM has accomplished in 4 years is remarkable. We properly funded a move from human to supercomputer to model to targets to virtual clinical trials to cured animals to a human trial in GWI.
We have had the ME/CFS point through to model, biologic subgroup identification, treatment targets identified, virtual models completed....then nothing. There is no real road to federally funded trials in the current NIH environment and so we depend on your generosity to continue to support the important work of the INIM.
Please visit www.nova.edu/nim/donations or mail your gift to the following address:
The Institute for Neuro-Immune Medicine (Attn: Ana Del Alamo, M.S., Administrative Director)
Center for Collaborative Research
3321 College Avenue
Ft. Lauderdale, FL 33314
On behalf of the entire INIM Team, we thank you for your continued support.
Nancy Klimas, M.D. Alison Bested, M.D. Irma Rey, M.D. Melissa Fils
Devra Cohen, M.P.H. Fanny Collado, R.N. Jared Urban
Kristy Pinkham
Lisette Pierlus Katherine Llosa Rodrigo Schmidt, M.S. Mary Jeffrey
Ricardo Castellanos Precious Leaks-Gutierrez
Mary Ann Fletcher, Ph.D. Maria Vera, M.D.
Ana Del Alamo, M.S Kristina Aenlle, Ph.D. Leonor Sarria
Claudia Vizcarra
Howard Lin
Jeff Cournoyer
Stephen Jaqua, M.S.
Moumita Bishayee
Shuntae Parnell
Francisco Carrera
Sabrina Fernandez Trishawn Shim
Mariana Morris, Ph.D.
Irina Rozenfeld, ARNP Nilda Hernandez
Coveannda Sumpter Dylan Isler
Elizabeth Balbin, M.A. Lisa Hue
Paula Waziry, Ph.D. Rajeev Jaundoo Sandra Yudice Rafael Iglesias
Beth Gilbert, M.S. Jimmy Arocho
Travis Craddock, Ph.D. Violetta Renesca, ARNP Aman Cheema, Ph.D. Maria Abreu, Ph.D. David Freeman
Luis Salgueiro, Ph.D. Lubov Nathanson, Ph.D. Bhisha Chen
Xiao Zeng, Ph.D.
Renan Fernandez Michelot Michel Monica Lazaro
Charles Ramos
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[hixxy]

Your original post makes it seems like they are ignoring the pre-menopausal group entirely when they actually have plans to do fund raising for their study next year. When there is need to fund 3 different studies you can't just expect them to pull funding out of their butt for all 3 simultaneously when funding is already hard to come by and usually the source of funding dollars has a say which study their funding is used in (it's often allocated to a specific hypothesis or trial so it's possible they had more robust hypotheses for the post-menopausal and male studies).

It's also nice to see a male ME/CFS study hasn't been forgotten entirely like they usually are (just check how many ME/CFS studies are 100% female participants). It's just a shame they couldn't fund it entirely.

 

[nandixon]

@sparklehoof

You might like to edit your title to add Dr Nancy Klimas’s name so that more people look at your thread. For example:

(Klimas) Nova Southeastern Funding for Pre-Menopausal Women

 

[sparklehoof]

@sparklehoof

You might like to edit your title to add Dr Nancy Klimas’s name so that more people look at your thread. For example:

(Klimas) Nova Southeastern Funding for Pre-Menopausal Women

Do you know how to edit the title? I can edit the body, but I don’t see an option to edit the title.

 

[sparklehoof]

@sparklehoof

You might like to edit your title to add Dr Nancy Klimas’s name so that more people look at your thread. For example:

(Klimas) Nova Southeastern Funding for Pre-Menopausal Women

Just found it.

 

[sparklehoof]

Your original post makes it seems like they are ignoring the pre-menopausal group entirely when they actually have plans to do fund raising for their study next year. When there is need to fund 3 different studies you can't just expect them to pull funding out of their butt for all 3 simultaneously when funding is already hard to come by and usually the source of funding dollars has a say which study their funding is used in (it's often allocated to a specific hypothesis or trial so it's possible they had more robust hypotheses for the post-menopausal and male studies).

It's also nice to see a male ME/CFS study hasn't been forgotten entirely like they usually are (just check how many ME/CFS studies are 100% female participants). It's just a shame they couldn't fund it entirely.

Thank you for sharing your perspective. I appreciate your interpretation of my questions and if you are male, I’m thankful that you are no longer feeling overlooked. I hope that this research helps you to regain your health.