About Us

The Lupus Foundation of America, Iowa Chapter

The LFA, Iowa Chapter is part of a national force devoted to solving the cruel mystery of lupus while providing caring support to those who suffer from its brutal impact.

With the help of informed volunteers, lupus medical experts, and committed and caring supporters, we:

  • support research and conduct education programs so everyone affected by lupus can have an improved quality of life;
  • provide information to ensure people with lupus and their families get answers and health professionals know about new means to diagnose and manage the disease; and,
  • conduct activities to increase awareness of lupus, rally public support for those who are affected by lupus, and advocate on their behalf.

Help Us Solve The Cruel Mystery!

If you join the fight, we will not have to concede victory to this terrible disease.  With your support and involvement, we will be able to solve the cruel mystery of lupus in our lifetime and end its devastating impact on millions of lives.

A Comprehensive Strategy

Lupus is a complex disease that requires a comprehensive strategy.  Our programs and services all have a common purpose: To improve the quality of life for all people affected by lupus.

Research

We raise money to support research through the Lupus Foundation of America’s National Research program, Bringing Down the Barriers™, which aggressively pursues an agenda to find answers to the most difficult questions and advance the science and medicine of lupus.  Our national research program has a unique three-pronged strategy: lead special initiatives, fund researchers, and advocate for expanded investment.

Education & Support Services

We answer questions about lupus, provide tools, resources, and referrals to doctors who treat lupus, and help guide individuals and families through the complexities of living with lupus and toward a better quality of life. 

Awareness Efforts                                                  

We conduct outreach efforts and share stories of those who suffer from lupus to increase awareness of lupus, bring greater attention to the disease and its devastating impact, and rally public support to join the fight to end lupus.

Advocacy Efforts

We advocate on behalf of all people with lupus, their families, and the health professionals who care for them.  We educate government officials and industry leaders on the urgent need to expand public and private investment in lupus research, education programs, and support services.

Contact Us:

    Phone: 515•279•3048

    Toll Free: 888•279•3048 (within IA only)

    Email: Info@LupusIA.org

    Mailing Address: PO Box 13174 • Des Moines, IA • 50310

    Office Address: 3839 Merle Hay Road, Suite 222 • Des Moines, IA • 50310

    Help us learn more about you. Please complete this brief online form.

 

Serving the State of Iowa

Services Provided to Lupus Patients

Lupus Information Line – The Lupus Foundation of America receives hundreds of calls annually from individuals requesting information. Health educators are standing by to answer questions. The toll-free number is 888-279-3048 (Iowa).  Our Internet Website assists thousands of visitors each and every year.  We have a patient navigator that is a nurse to help them navigate through their lupus journey. National 1-800-NO-LUPUS.

Public Awareness – The Lupus Foundation of America creates awareness by placing public service announcements on broadcasted networks, on cable and satellite channels and in major newspapers and magazines.  We also embark on social media sites. The LFA also works with producers, editors, writers and reporters to increase the exposure for lupus through the news and media.  We helped with the “Know Lupus” initiative in Iowa by securing four television interviews with local channels, and six radio interviews during May 2015 – Lupus Awareness Month.  Lou Sipolt from CW Iowa Live is our 2016 Honary Walk Chair for the Walk to End Lupus Now - Des Moines.  For two years we have hosted an awareness event at an Iowa Cubs game and in 2016 for the first time in our history the Financial building was lit up purple on Put on Purple Day.  In 2017 we look forward to our third year with our "KNOW LUPUS" campaign.

Research – The LFA National Medical Council solicits research proposals from hundreds of medical centers, universities and research institutions.  Each year, the Council selects several projects for funding.  The Foundation seeks innovation and promising new research ideas that someday may lead to a cure for lupus.  We have found that ultimately this is what the patient really wants. They want better treatment, quicker diagnosis, and a cure (a survey completed in 2011 conducted by the LFA GOC).

Federal & State Relations – The federal government is an important partner with the LFA in the search for new knowledge about lupus. The LFA works in partnership with the Department of Health and Human Services, the National Institute of Health and the Centers for Disease Control and Prevention to stimulate medical research.  We have a strong advocacy arm in Iowa. Most recently we have been advocating for patient literacy and medication coverage, with work also done in communicating the needs to shorten prior-authorization timeframes.

Education and Training – The Lupus Foundation of America develops programs to train volunteers, community leaders and representatives of the medical community to provide services to people with lupus. The LFA has assisted in the certification of individuals to lead local support groups for lupus patients and their caregivers.

Ten-Step Self Help Groups – These groups have a defined outline that helps a patient manage their lupus journey to ensure a better quality of life, our mission.  Understanding the disease and being able to control the management will empower patients with greater outcomes.  In September 2016, we will offer an online resource center for patients. Created and courtesy of our Greater Ohio Chapter and our National Organization.

Patient Support Groups (Local Lupus Meetings) – Lupus Support Groups for people with lupus and members of their family are held April-November throughout our service area.  Support groups usually meet once monthly under the auspices of a trained support group leader.  Speakers from the medical community frequently present a discussion about various aspects of lupus, including the latest medical research findings, disease management, nutrition, stress reduction and treatment options.

A class for Newly Diagnosed Lupus Patients – The LFA Iowa Chapter conducts classes providing newly diagnosed lupus patients and their families with basic information about managing the disease and living well. Usually, this is the first opportunity for lupus patients to realize that there are other people available to help them cope with their illness.

Health Fairs – This is a huge outreach area for us to get involved in neighborhood churches, schools, and businesses to provide education to those most in need about lupus.

Information and Referrals – The LFA Iowa Chapter provides referrals for physicians, functional care providers - our Wellness Council, services and treatment centers, as well as answering basic questions about the disease. A free Lupus Information Packet is available that provides basic information, a list of local support groups, and details about services.

Publications & Lending Library – The Lupus Foundation of America Publishes the Lupus Now magazine. This publication provides patients and family members with the latest information on lupus research and treatments.  The LFA also sells or loans peer-reviewed books and videos.

Lupus Gatherings – We have four separate gatherings each year that bring together patients and their families so that they may foster relationships within the lupus community. Lupus does not have to be a lonely misunderstood illness.
Educational Telephone Conference Calls – A new educational series featuring telephone conference calls on a variety of topics defined to provide you with important information about living with lupus. This opportunity fills the needs of those who are transportation challenged or electronically challenged to learn from some of the world’s leading lupus experts from the comfort and privacy of their home.

Know Lupus Journal – We have created a journal designed specifically for lupus patients. In addition to the journal patients are invited to join our private Facebook Chat Room to be in a community with one another on a regular basis.  This initiative has built relationships and fostered a sense of togetherness in the lupus community of Iowa.

Website – In the world of electronic communication we have a constant ever evolving project with our website.  It is here that thousands of lupus patients access information about lupus.  We continue to strive to make it efficient and user friendly. It is constantly being updated with the latest and most accurate information about lupus. You can visit us at www.lupusia.org. You will find a wealth of information pertaining to lupus and our many programs and events.

Social Media – This new way of sharing information and connecting to individuals has become the driving channel for all of our communication.  We are on Facebook, Twitter, Instagram, Pinterest, Linked-In and YouTube.  We build a monthly content calendar and strategize our communication to reflect equally; patient stories, education, lupus facts, events and advocacy initiatives taking place in Iowa.

E-News Alerts – LFA Iowa has entered several thousand email addresses on our list server.  Our website also provides a link that a patient can subscribe to our mailing list. The electronic newsletter is used monthly to broadcast medical updates and all lupus news pertaining to Iowa.  This is the most efficient and cost effective way of communicating with all of those that we serve.

Educational Materials – LFA - Iowa is the leading source of the most accurate and latest information about lupus in the country.  We will continually provide communication regarding new data received on lupus; research findings as well as other resources developed to help with the daily quality of life for patients.

Lupus Research Registry™ - Is enabling individuals to indicate their interest in participating in lupus clinical studies in their local areas.

 

LFA, Iowa Board of Directors

The Iowa Chapter is proud to be led by a strong Board of Directors who provide governance, strategic advice and development assistance.

 

Hannah Garside

hannah.garside@gmail.com

Shellie Knipfer-McClellan

shellie.knipfer@gmail.com

Nicole Stokes

nstokes06@gmail.com

Lindsey Wisham - Chair

lindseywisham@gmail.com

Cynthia Filbach

cynthiafillbach@gmail.com

Jenice Whisenand

jenice.whisenand@gmail.com

Kristine Guthrie

qualls41@msn.com

Lauren Calhoun 

lauren.calhoun@unitypoint.org

Larry Cotlar

larry@larrycotlar.com

Monica Hoover

mhoover@shelterinsurance.com

Susan Smith

swells1005@gmail.com

LFA, Iowa Chapter Staff

Melanie Redmond Guanci President & CEO

 melanie@lupusia.org

Jessica Reiter-Flax Development Manager

 jessica@lupusia.org