research

A Life and Legacy Dedicated to Research

On June 10, 2018 the GBS|CIDP Foundation International will be holding its 5th Annual New Jersey Walk & Roll. The event will be chaired by local resident, and Foundation volunteer, Susan Salzmann. Recently we had the pleasure of sitting down with Susan as she shared the complex story of her husband’s personal journey with CIDP.

Fiery Salzmann Image

Susan met Tom Salzmann in 1964. They were fifteen years old. “We spent our entire lives together,” said Susan as she began to explain their unexpected journey with this rare and disabling disease. Tom was a scientist and researcher with a career that began in 1975 when he joined Merck Research Laboratories in Rahway as a senior research chemist. His initial research efforts were in the area of carbapenem antibiotics, which ultimately led to a career highlight, the discovery of Primaxin. “Tom loved science and he dedicated his entire life to research,” said Susan. In 1984, he received the company’s prestigious Director’s Award, the highest award bestowed upon a Merck employee. He held positions of increasing responsibility within Merck Research Laboratories culminating with his appointment to the position of executive vice president, Worldwide Preclinical Development in 2002. Tom retired as executive vice president in 2004 after 30 years of employment with Merck. Following his retirement, he focused on consulting for the biotech industry and belonged to many scientific advisory boards of leading pharmaceutical companies.

Yet in 2009, while on a business trip to India, a sudden and frightening ailment occurred: he lost his sight entirely in one eye. “His colleagues were able to get him home and he went directly to his GP. No one really knew what was happening. Eventually he was sent to the hospital,” said Susan. “He was sent to UMass, then to a number of smaller hospitals. But his symptoms were worsening and he was beginning to lose strength in his arms and legs and he had severe back pain. Finally they transferred him to UPenn where he was diagnosed with CIDP.” Tom was treated with IVIG, which offered some short term relief. But eventually, reoccurring, severe cases of pneumonia caused his condition to worsen. After a nine month battle, including a month of rehabilitation at Kessler Institute, Tom sadly passed away on October 30, 2009.

However, Tom’s passing did not stop Susan from fighting. Only now, she is fighting for something new. She is determined to raise awareness and support for CIDP and for the global leading foundation, the GBS|CIDP Foundation International.

“In 2013 I got more involved with the GBS|CIDP Foundation and read all about the condition. I received their newsletters, booklets, and learned about their programs and fundraising walks. Then, I got invited to the Walk & Roll in Pennsylvania. I went to it and I thought to myself, I can put a walk together in New Jersey! I have a big family and a very supportive community, I knew they would want to get involved.” Susan was encouraged by meeting other GBS and CIDP patients and grew more determined to help other families who were going through the same hardship of coping with a rare disease. “There was always such confusion in the ICU, and Tom couldn’t speak for himself. I am determined to educate and help others in that situation.”

Susan and her family are now planning their 5th annual Walk & Roll event. “Each year it grows. We see new teams and meet new people. Honestly, I was going to pass the torch to another Walk chairperson this year but when I told my grandkids they were very, very disappointed,” said Susan. “But we have to do this! It’s for grandpa!” they all said. “I quickly realized that this had become a lot more than a fundraising walk for my family. It was a way to stay connected to their grandfather too.”

When Susan learned that funds raised during the 2018 Walk & Roll program would be donated to GBS, CIDP research she said, “Tom spent his whole life in research. And now it is just so ironic that we can still, as a family, be so involved in research, even after his passing. Only this time its research for CIDP.”

Walk & Roll is the Foundation’s signature community event designed to create awareness of GBS, CIDP and Multifocal Motor Neuropathy (MMN.).  Walk & Roll is held in cities all across the US and brings together patients, family members and caregivers. As of 2018, the Foundation announced that funds raised through Walk & Roll will support research for treatments, diagnostic efficiency and genetic inheritance for GBS, CIDP and its variants. If you are interested in attending the June 10th, 2018 Walk & Roll in Basking Ridge, New Jersey, you can sign up HERE or would like to plan a Walk & Roll of your own, please contact Jessica McManus, at GBS|CIDP Foundation International at 610-667-0131 x 21 or  jessica.mcmanus@gbs-cidp.org.

2017 GBS|CIDP Foundation Grant Awardees

(#1) Title of the project: Enhance Peripheral Nerve Repair by Modulating Macrophage Subsets

Investigator:

Gang Zhang, M.D; Ph.D
Assistant Professor of Neurology
University of Texas, Health Sciences Center at Houston

Synopsis:

Intravenous immunoglobulin (IVIg) is now the first-line therapy for Guillain-Barré syndrome (GBS). However, there are many disadvantages including high cost, supply shortages, and multiple side effects that are usually associated with high dose and long infusion time of IVIg. Therefore, new therapeutic strategies that can limit the nerve injury during the acute phase of the disease and enhance repair during recovery period are highly desirable. It is in this context we propose a novel strategy of modulating macrophage polarization (promote M2 polarization) for treating GBS.


(#2) Title of the project: Probing the role of skin biopsy in CIDP nodo-paranodopathies

Investigator:

Raffaella Lombardi, B.S., Fondazione IRCCS Instituto Neurologico C. Besta, Milan, Italy

Co-Investigators:

Jerome Devaux, Ph.D,

Diego Franciotta, M.D., Ph.D,

Giuseppe Lauria, M.D.1

Synopsis:

IgG4 antibodies against some proteins at the node of Ranvier, anti-neurofascin 155 (Nfasc155) or anti-contactin 1 (CNTN1) have recently been identified in the serum of a subset of CIDP patients. Identification of specific changes in myelinated dermal skin nerves and correlation with clinical course and serological data are unknown. We aim addressing these issues to provide new biomarkers of disease activity and patient stratification. 


(#3) The Ernest Hayden Award
Title of the project: Flavivirus and Arbovirus associated Guillain-Barré syndrome in South and South-East Asia.

Investigator:

Dr. Thirugnanam Umapathi

Department of Neurology, National Neuroscience Institute (NNI), Singapore,

Co-Investigators:

Dr Say Saysavath, Mittaphab Hospital; Dr Somchit Vorachit, Setthathirath Hospital,Vientiane,

Laos. Dr Hoang Nghia, Vietnam 175 Hospital, Ho Chi Minh City, Vietnam,Dr Surat Tanprawate, Chiangmai University, Thailand, Dr Mohammad Wasay; Dr Sara Khan, Aga Khan University, Karachi, Pakistan, Dr Terrence Thomas, KKH Children’s Hospital, Singapore,Dr Hugh Willison, Glasgow University, UK Dr Bart Jacobs, Erasmus University, Rotterdam, Netherlands

Dr Ooi, Eng Eong, Duke-NUS, Singapore, Dr Lisa F.P. Ng, A*Star Singapore.

Lao-Oxford-Mahosot Hospital Wellcome Trust Research Unit’s (LOMWRU), Vientiane, Laos

Synopsis:

This is a prospective, observational multi-center study of GBS in six S SEA countries. GBS patients and hospital, community controls will be tested for evidence of recent infection and serological response to previous/coinfections with flavi/arbovirus.

For information regarding Grants please contact Lori.Basiege@gbs-cidp.org.

Research Published on Quality of Life in Inflammatory Neuropathies: the IN-Qol

In 2008 the GBS|CIDP Foundation awarded a $60,000 to Ingemar S. J. Merkies, MD, PHD Universiteit Maastricht(The Netherlands), Professor Pieter A. van Doorn (GMAB member) Erasmus MC (The Netherlands) and Richard A. Lewis, MD  (GMAB member), Cedars Sinai, for their study in Peripheral Neuropathy Outcome Measures Standardisation (PeriNomS). On February 20, 2018 a paper was published with the results of this study entitled, Quality of Life in Inflammatory Neuropathies: the IN-QoL, in the Journal of Neurology, Neurosurgery and Psychiatry.

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