May Awareness Guest Blogging Campaign

 

William V. Padula OD, SFNAP, FAAO, FNORA

Coming Wednesday, May 1st

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The Visual Consequences of Lyme Disease:
Early Diagnosis & Treatment

William V. Padula, OD is Director of the Padula Institute of Vision Rehabilitation in Guilford, CT.  He is a Fellow of the American Academy of Optometry and the Founding President of the Neuro-Optometric Rehabilitation Association (NORA).  Dr. Padula is on the faculty for Western University of Health Sciences College of Optometry and Salus University of Health Sciences College of Optometry.

Dr. Padula has conducted research discovering Post Trauma Vision Syndrome (PTVS) and Visual Midline Shift Syndrome (VMSS).  Dr. Padula has written numerous publications including a book titled: Neuro-Optometric Rehabilitation and Neuro Visual Processing: An Integrated Model of Rehabilitation. He is the primary author of a chapter on vision in Brain Injury Medicine: Principles and Practice.  He has also been awarded six U.S. Patents.

James L. Occi, MA, MS, PhD in progress

Coming Wednesday, May 8th

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“Scientists Predict a Bad Year for Ticks.” Oh Really?

James (Jim) Occi is a microbiologist who has been involved in searching for new antibiotic entities for almost 30 years. He has done research in big pharma for over 20 years and as a research microbiologist at New Jersey Medical School in the Department of Emerging Pathogens (Newark).  Jim has recently joined the New Jersey Department of Health. Jim is pursuing his PhD at Rutgers University wants to be a medical entomologist when he grows up. For his thesis, Jim is studying tick-borne diseases in New Jersey tick populations. He has a BS and MA in Biology from Montclair State University and an MS in Microbiology from Seton Hall University.

Richard Horowitz, MD

Coming Wednesday, May 15th

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Have Hope: “Persister” Drug Regimens Provide Novel Solutions for Many Suffering Lyme Patients

Dr. Richard Horowitz is a board-certified internist and medical director of the Hudson Valley Healing Arts Center, where he has treated over 13,000 Lyme and tick-borne disease patients during the past 30 years. He is the author of two best-selling books, Why Can’t I Get Better? & How Can I Get Better? An Action Plan for Treating Resistant Lyme and Chronic Disease. Dr Horowitz was also a member of the HHS Tick-borne Disease Working Group and Co-chair of the “Other Tick-borne Diseases and Co-infections” subcommittee which provided recommendations to Congress to improve the care of those suffering with tick-borne disorders.

Congressman Christopher H. Smith (NJ-04)

Coming Wednesday, May 22nd

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A Message from Congressman Chris Smith

Elected in 1980, Congressman Chris Smith (NJ-04) is currently in his 20th term in the U.S. House of Representatives, serving New Jersey’s Fourth Congressional District.

Since the early 1990s, Smith has authored comprehensive amendments and legislation to increase federal funding for Lyme research and enhanced treatment access for Lyme patients.  Smith co-founded and currently co-chairs the bipartisan Lyme Disease Caucus, which serves as an incubator for Lyme disease legislation and promotes Lyme disease awareness in the House of Representatives. 

Smith’s legislation (H.R. 611; H.R. 2557; H.R. 1179; H.R. 741; H.R. 3427) to create a Tick-Borne Diseases Advisory Committee served as the prototype and was ultimately incorporated as Section 2062 in the 21st Century Cures Act (P.L. 114-255).  Section 2062 established the first federal Interagency Lyme and Tick-Borne Disease Working Group dedicated to facilitate research, development, and collaboration on Lyme disease.  In November 2018, the Working Group released its first report to Congress, stating: “[i]ncreased Federal funding, prioritization, and leadership are needed to reverse the alarming trends associated with tick-borne diseases.”  Smith is already working on legislation to help the federal government pursue this mandate.

Brian Dashore

Coming Wednesday, May 29th

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How My Differing Childhood Experiences Impacted My Educational Life

Brian Dashore is a 17-year-old teen who has had Lyme Disease, Mold Biotoxin illness, and other co-infections. He has been undergoing treatment for eight years with multiple world-renowned doctors. Brian is the son of Jodie Dashore who is a well-known doctor in this field. He recently established a website called teenlymehub.com with a Facebook group.  He will be talking about the educational aspects of a child with Lyme Disease.

 

 




NE Ohio Lyme Foundation 3rd Annual Lyme Symposium

The NE Ohio Lyme Foundation will hold its 3rd Annual Lyme Disease Symposium on Saturday, May 11, 2019, in Andover, Ohio. The event will run all day, from 9am to 5pm. Registration is required. A registration fee of $20.00 includes lunch catered by Panera Bread.  LDA president, Pat Smith will join Dr. Charles Curie, DVM; Dr. Elena Frid; Dr. Linda D’Eramo;  Dr. Adam Davis; Robert Giguere, Igenex Labs, Inc.; and Dr. Glen Needham as speakers at the event.  Lyme Disease Association has provided an education grant in support of this event. Register here.



CDMRP announces 2018 applications recommended for funding

The list of Fiscal Year 2018 Tick-Borne Disease Research Program Career Development Award applications recommended for funding is for informational purposes only. Identification on the list of applications recommended for funding is not intended to either confer a right to funding nor does it guarantee funding. The award of federal funds to support any of these applications is contingent upon successful negotiations and applicable federal policy.

FY 18 Career Development Award: Johns Hopkins University, Paul Blair and University of Illinois at Urbana-Champaign, Rebecca Smith

FY 18 Research Program Investigator-Initiated Research Award: GearJump Technologies, LLC, Noel Elman; Henry M. Jackson Foundation, John Dumler; Rockefeller University, Margaret MacDonald; Uniformed Services University of the Health Sciences, Cade Nylund

For more information click here.




Lyme & Tick-Borne Diseases Congressional Town Meeting

The Lyme & Tick-Borne Diseases Congressional Town Meeting will be held Wednesday, May 29, 2019 from 6:45pm-930pm at the Wall Township Municipal Building Community Room, 2700 Allaire Rd, Wall Township, NJ.  The town meeting is sponsored by US Congressman Christopher H. Smith. Hear from nationally-recognized Lyme disease experts about current efforts to combat Lyme and Tick-Borne diseases, updates on diagnosis and treatment, and how to protect yourself and your family, and more.  LDA president, Pat Smith, will join US Congressman, Christopher H. Smith; CDC, Deputy Director, Division of Vector-Borne Diseases, Ben Beard, PhD; and Richard Horowitz, MD as speakers at the meeting.  Seating is limited, and advanced registration is required.  To register click here, or visit ChrisSmith.House.gov.

 




Lyme Connection’s 13th annual Patient Conference & Health Fair

Lyme Connection will be holding its 13th Annual Conference on Thursday, May 16, 2019 in Danbury, Connecticut.  The Conference will feature experts in patient care, research, tick control, testing and new product development. LDA president, Pat Smith, will join Dr. Robert Bransfield and Dr. Kenneth Liegner as guest speakers for this event. The event will be held from 5pm-930pm on the campus of Western Connecticut State University and admission is FREE.  Lyme Connection is a LDANet supporter member of Lyme Disease Association.  For details about the conference please visit Lyme Connection at facebook.com/LymeConnection or email info@LymeConnection.org.




Report on HHS Lyme Innovation Meeting Released

hhsOn November 20, 2018, the HHS Office of the Chief Technology Officer, CTO, announced a Lyme Innovation initiative which aims to accelerate innovation in the prevention, diagnosis and treatment of tick-borne diseases through the development of next-gen technologies, interdisciplinary collaborations, and data-driven innovations for tick-borne diseases. LDA President Pat Smith was invited participant by HHS at the first Lyme Innovation DC meeting on December 4, 2018. The meeting brought together 80 individuals from diverse groups to help government solve the problems associated with Lyme disease.

The Center for Open Data Enterprise published a report on the meeting with highlights, recommendations, and actions to take. Read the report below.

https://www.hhs.gov/cto/blog/2019/04/15/lyme-innovation-roundtable-highlights-and-next-steps.html

Read more on the Lyme Innovation initiative

https://www.hhs.gov/cto/blog/2018/11/20/the-hhs-office-of-the-cto-announces-a-lyme-innovation-initiative.html




5th Annual Midcoast Lyme Disease Support & Education Conference

Midcoast Lyme Disease Support & Education (MLDSE) will be holding its 5th Annual Conference on April 26, 2019 in Augusta, Maine. This conference is titled “Empowering the Patient.”  LDA president, Pat Smith, will join 16 other speakers.  She will present “Lyme and Tick-Borne Diseases in the US 2019: 44 years into Lyme.”  The event will be held from 8 am-5 pm at the Augusta Civics Center and admission is FREE.  Lyme Disease Association is supporting this event through an education grant. MLDSE is an affiliate of Lyme Disease Association. Update April 28: Hundreds of individuals attended and 63 exhibitors were at the conference. For details about the conference please visit the MLDSE conference page:  http://conference2019.mldse.org/





Researchers! Fiscal Year 2019 TBDRP Program Announcements are now posted

The FY19 Tick-Borne Disease Research Program (TBDRP) Program Announcements managed by the Department of Defense (DOD) office of Congressionally Directed Medical Research Programs (CDMRP) are now posted to grants.gov and on the CDMRP website here.

FY19 funding opportunities available for the Tick-Borne Disease Research Program (TBDRP) include:

· Career Development Award

· Idea Award

· Investigator-initiated Research Award

Pre-Applications are due May 22, 2019 and Applications due August 22, 2019.

Descriptions of each of the funding opportunities, eligibility, key mechanism elements, and funding can be found in the Program pre-announcement. FY19 pre-announcements can be found in the CDMRP home page features at here.

Flyer on CDMRP TBD program highlights

https://cdmrp.army.mil/tbdrp/pbbks/tbdrp_programhighlight2019.pdf

NOTE from Lyme Disease Association: Please do not contact us for information. Contact the CDMRP TBDRP. Thank you!




Congressman Chris Smith: Lyme & TBD Testimony

March 27, 2019

House Appropriations Committee

Labor, Health and Human Services, Education Member Day Hearing

1:00:30 to 1:02:20 (Lyme & TBD Discussion)

Congressman Smith (NJ) testifies about working with Pat Smith and the Lyme community since 1992, pushing for an advisory committee since 1998, how language finally got put into 21st century cures act and the first report by this (Working Group) advisory committee came out in 2018. It was a “block buster of missed opportunity” over the years and an invitation to all of us to increase efforts and funding.




LDA Provides Input to National Institutes of Health Strategic Plan Development

The National Institutes of Health put out a request for information in February 2019 for stakeholders to submit specific comments that were to be submitted through an online form.  The NIH is developing a strategic plan to advance tick-borne disease (TBD) research and development over the next five years and beyond.

The Lyme Disease Association, Inc. submitted the following letter in response to the request. No comments will be made back to the responders. NIH encouraged organizations (e.g., patient advocacy groups, professional organizations) to submit a single response reflective of the views of the organization/membership as a whole when possible.

The Tick-Borne Disease Working Group under HHS in Washington, DC, submitted a report to Congress in November of 2018 that made the following recommendation:

Recommendation 8.1: NIH: Create an NIH tick-borne disease strategic plan, with public input during creation and implementation, to address tick-borne diseases, including all stages of Lyme disease. Include in the strategic plan the coordination of research funding across NIAID, NINDS, NIAMS, and NIMH to increase knowledge of pathogenesis, improve diagnosis, and develop and test new therapeutics for tick-borne diseases. Update every five years.

Click here for Lyme Disease Association letter to NIH

NIH request for Information

https://grants.nih.gov/grants/guide/notice-files/NOT-OD-19-077.html