Services

Support Group Meetings

A program to help you connect to people in your community!

Everyone is welcome to attend meetings being planned across Michigan and Indiana. These meetings are designed to assist people with lupus get connected with one another and find out how the Michigan Lupus Foundation is helping people better understand the disease.

Support group meetings are offered free of charge to anyone interested in participating. The lupus help line is also available during regular office hours for further information.

Click here to find a Support Group near you!

Membership

Membership

The Board of Directors of the Michigan Lupus Foundation have made a targeted effort to effectively promote the benefits of either an Individual or Corporate Membership investment to our nonprofit organization.

As a valuable source of information for an illness that is difficult to comprehend, the Michigan Lupus Foundation has been faithfully serving families affected by lupus since 1974. As the only nonprofit organization located in the state of Michigan dedicated to helping people understand how to live with lupus, we offer a number of worthwhile benefits and services for supporters that choose to invest in our group.

Individual Michigan Lupus Foundation Membership is only $25 and members receive:

  • Free admission to either our Metro Detroit or Grand Rapids area Lupus Symposiums
  • Quarterly mailings of our printed Newsletter: “Lupus Ledger”
  • Weekly email Newsletters – sent every Friday morning
  • Access to our mailing list which includes information such as drug therapies, doctors in your area & coping mechanisms
  • New for 2013: Complimentary phone counseling
  • New for 2013: Website content exclusive for members who visit milupus.org

Corporate Michigan Lupus Foundation Membership is only $125 and members receive:

  • Logo promotion of our Golf Outing – June 1st at Twin Lakes Golf Club in Oakland, MI (200+ participants in 2012)
  • Logo on sinage at our four “Walks for Lupus” in 2013: Metro Detroit, Grand Rapids, Jackson, Lapeer (1,000+ attendees)
  • 2013 digital impact with company logo on the homepage of milupus.org, Social Media outlets, HTML emails, and the Michigan Lupus Foundation’s weekly electronic and quarterly printed Newsletters

All contributions to the Michigan Lupus Foundation are immensely helpful for us to achieve our mission of improving lupus treatment conditions in Michigan and northern Indiana with the goal of finding a cure for those affected by this devastating disease. By making a $25 Individual Membership investment, the Michigan Lupus Foundation can effectively connect with you to address your specific treatment or coping needs. For our professional contacts, a $125 Corporate Membership allows the Michigan Lupus Foundation to help build your business through over 85,000 supporters of our organization.

Together we can find a cure!

Click here to become a member

Educational Resources

There are many different aspects to lupus and this section seeks to provide links to websites that cover a variety of topics. These sites will be of interest to those who are diagnosed with lupus, caregivers, family members, friends and healthcare professionals.

Disclaimer: These links are provided as a public service. Providing these links does not imply endorsement or support of any program or organization. The Michigan Lupus Foundation is not responsible for the content of the pages to which links are provided.

Caregivers and Families

 

Home Healthcare Agencies
http://www.homehealthcareagencies.com/
My Family Health Portrait
https://familyhistory.hhs.gov/fhh-web/home.action
A tool from the surgeon general, that can help you keep track of your families medical history.
National Alliance for Care Giving
http://www.caregiving.org
National Caregivers Library
http://www.caregiverslibrary.org/
National Family Caregivers Association
http://www.thefamilycaregiver.org

Drug Assistance Programs

 

Abbott Patient Assistance Program
http://www.abbottpatientassistancefoundation.org/
The Abbott Patient Assistance Program (PAP) provides Abbott medications, at no cost, to patients in financial need.
Access2Wellness
http://www.access2wellness.com/a2w/index.html
Too many people today have to choose between their medicines and other life necessities. If this describes you, or someone you care for, you’ve come to the right place. Access2wellness is designed to assist people with limited or no health insurance get the help they need to lead healthier lives.
AstraZeneca
http://www.astrazeneca-us.com/help-affording-your-medicines/
Benlysta Co-Pay Assistance Program
http://www.benlysta.com/benlysta-facts/paying-for-benlysta.html
The Benlysta® Co-pay assistance program is for people who have commercial insurance (not a state, federal, or government health insurance plan like Medicare or Medicaid), or whose insurance does not provide coverage for BENLYSTA, and meet other eligibility requirements. 1-877-423-6597
Bristol Meyers Sqibb
http://www.bms.com/products/Pages/programs.aspx
Chronic Disease Fund
http://www.cdfund.org/
Chronic Disease Fund® is a non-profit, full service financial and medication assistance organization. We exist to improve the health and quality of life of patients battling chronic disease, cancer or other life-altering conditions who cannot afford the medications they so desperately need.
Co-Pays.org
http://www.copays.org
A co-pay relief program to assist insured Americans who medically and financially qualify.
Eli Lily Company
http://www.lillycares.com/Pages/index.aspx
Eli Lilly and Company index of all company programs to assist patients with prescription drug costs.
Free Medicine Program
http://www.freemedicineprogram.com
GlaxoSmithKline
http://www.bridgestoaccess.com/
GlaxoSmithKline’s patient assistance program for non-oncology medicines, provides GSK prescription medicines to eligible low-income patients without prescription drug benefits.
Jannsen
http://www.jjpaf.org/
Map RX
http://www.maprx.info/
Map RX is a is a coalition of patient, family caregiver and health professional organizations committed to safeguarding the well-being of patients with chronic diseases and disabilities under Medicare Prescription Drug Coverage.
Merck Helps
http://www.merck.com/merckhelps/
Needy Meds
http://www.needymeds.org/
NeedyMeds, a 501 (c) (3) nonprofit organization, is a comprehensive resource for people who need help paying for health care and prescription medication costs.
Novartis Pharmaceuticals Corporation
http://www.pharma.us.novartis.com/about-us/our-patient-caregiver-resources/paf-enrollment.jsp?usertrack.filter_applied=true&NovaId=2935376876913808406
Novartis Pharmaceuticals Corporation’s Patient Assistance Program (PAP) provides assistance to patients experiencing financial hardship who have no third party insurance coverage for their medicines
Partnership for Prescription Assistance
http://www.pparx.org
Brings together Americas pharmaceutical companies, doctors and other health care providers and community groups to help those who lack prescription coverage get the medicines they need through the pubic or private program that is right for them.
Pfizer
http://www.pfizerhelpfulanswers.com/pages/misc/Default.aspx
Roche
http://www.gene.com/gene/products/access/
RXAssist
http://www.rxassist.org
Offers a comprehensive database of assistance programs.
RXHope
http://www.rxhope.com
The only assistance program Internet initiative financially supported by PhRMA and participating pharmaceutical companies.
Schering-Plough
http://www.merck.com/responsibility/pap-information.html
The Healthwell Foundation
http://healthwellfoundation.org/how-to-apply.html
The Healthwell Foundation® is a 501(c)(3) non-profit organization established in 2003 that is committed to addressing the needs of individuals with insurance who cannot afford their copayments, coinsurance, and premiums for important medical treatments.
Together RX
http://www.togetherrxaccess.com
Has a free prescription savings card for eligible residents of the US and Puerto Rico who have no prescription drug coverage. 

Employment and Disability

 

Americans with Disabilities Act
http://www.usdoj.gov/crt/ada/adahom1.htm
The Americans with Disabilities Act gives civil rights protections to individuals with disabilities similar to those provided to individuals on the basis of race, color, sex, national origin, age, and religion. It guarantees equal opportunity for individuals with disabilities in public accommodations, employment, transportation, State and local government services, and telecommunications. Questions and Answers about the ADA – http://www.usdoj.gov/crt/ada/q%26aeng02.htm
Council of Disability Rights
http://www.disabilityrights.org/faq1.htm
Disability Rights Education and Defense Fund
http://www.dredf.org/
Works to advance the civil and human rights of people with disabilities through legal advocacy, training, and education.
DisabilityInfo.gov
http://www.disabilityInfo.gov
This federal government website covers a variety of topics related to employment of people with disabilities.
Disabled Online
http://www.disabledonline.com
Offers news stories, message boards, classifieds, disabled topics and chat rooms.
FindLaw.com
http://employment.findlaw.com/employment/employment-employee-discrimination-harassment/employment-employee-disability-discrimination-top/
Provides information about legal protections, rights and obligations for people with disabilities.
Job Accommodation Network
http://www.jan.wvu.edu/
The JAN is a free consulting service designed to increase the employability of people with disabilities.
National Institute on Disability and Rehabilitation
http://www2.ed.gov/about/offices/list/osers/nidrr/index.html
The National Institute on Disability and Rehabilitation Research (NIDRR) provides leadership and support for a comprehensive program of research related to the rehabilitation of individuals with disabilities. All of their programmatic efforts are aimed at improving the lives of individuals with disabilities from birth through adulthood.
Patient Advocate Foundation
http://www.patientadvocate.org/index.php
Patient Advocate Foundation is a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.

Government Agencies

 

Catalog of Federal Domestic Assistance
https://www.cfda.gov/
Provides access to a database of all Federal programs available to State and Local governments; federally-recognized Indian tribal governments; and private profit and nonprofit organizations and institutions; specialized groups; and individuals.
Centers for Medicare and Medicaid Services
http://www.cms.gov/
Learn about regulations, how to apply, who can apply, where to get help and more.
Govbenefits.gov
http://www.govbenefits.gov
Portals to many Federal, State and local government websites that offer many services and programs for people with chronic conditions.
Health and Human Services
http://www.hhs.gov
Healthcare.Gov
http://www.healthcare.gov
A new comprehensive government website that helps you learn the new laws, find insurance, answers to questions and more.
Stem Cell Information from the NIH
http://stemcells.nih.gov/

Health Insurance

 

Health Insurance Portability & Accountability Act (HIPAA)
http://www.dol.gov/ebsa/newsroom/fshipaa.html
Protects and improves the portability and continuity of health insurance coverage and requires that most health plans provide coverage for pre-existing medical conditions after 12 months.
High-Risk Health Insurance Pool
http://www.nahu.org/consumer/healthcare/index.cfm
High-risk pools are private, self-funded health insurance plans organized by state to serve high-risk individuals who meet enrollment criteria and do not have access to group insurance. Thirty-three states have high-risk pools.
Medicaid
http://www.cms.hhs.gov/MedicaidEligibility/01_Overview.asp
Medicaid is available only to certain low-income individuals and families who fit into an eligibility group that is recognized by federal and state law. Medicaid does not pay money to you; instead, it sends payments directly to your health care providers. Medicaid is a state administered program and each state sets its own guidelines regarding eligibility and services. To help determine if you are eligible for a variety of governmental programs, please visit GovBenefits.gov and BenefitsCheckUp.org websites.
Medicare
http://www.medicare.gov
www.medicare.gov is a federal insurance program that pays for medical care for people who qualify.
NY State Insurance Regulation Appeals
http://www.ins.state.ny.us/extapp/extappqa.htm
This site gives you the forms and instructions on how to appeal through the state if your Insurance company will not cover you for a procedure or for medications you need (for instance off label medication like CellCept in the treatment of Lupus)
Patient Advocate Foundation
http://www.patientadvocate.org/
Patient Advocate Foundation is a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.

Health Related Organizations

 

American Behcet`s Foundation
http://www.behcets.com
American Dietetic Association
http://www.eatright.org
American Pain Foundation
http://www.painfoundation.org
American Sleep Apnea Association
http://www.sleepapnea.org
Arthritis Foundation
http://www.arthritis.org/
Fibromyalgia Network
http://www.fmnetnews.com/
National Kidney Foundation
http://www.kidney.org
National Sleep Foundation
http://www.sleepfoundation.org/
Raynaud’s Foundation
http://www.raynauds.org
Scleroderma Foundation
http://www.scleroderma.org
Sjogren’s Syndrome Foundation
http://www.sjogrens.org
Vasculitis Foundation
http://www.vasculitisfoundation.org/

Kids Links

 

504 School Forms
http://www.kidlupus.org/pdf/SAP.pdf
A Guide to College for Students with Disabilites
http://www.1800wheelchair.com/news/post/guide-to-college-for-students-w-disabilities.aspx
This informative site can help children with lupus, and other diseases and disabilities with scholarships, knowing their rights and more.
Band-Aids and Blackboards
http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/
Believe In Tomorrow
http://www.believeintomorrow.org
Brave Kids
http://www.bravekids.org
Chemo Angels
http://www.chemoangels.com
Children’s Wish Foundation
http://www.childrenswish.com
Friends of Karen
http://www.friendsofkaren.org
Give Kids the World
http://www.gktw.org
Grant Angel Wishes
http://www.grantangelwishesandtravel.org/
Grant Angel Angel Wishes and Travel Foundation was created specifically for the purpose: •Granting wishes for children who have life-threatening conditions •Granting wishes for other children and adults who are disabled or have other specific major health needs •To support other foundations and non-profit organizations •And to grant scholarships to young fine arts students and athletes through a program that teaches to pay it forward and bless others.
Kids Wish Network
http://www.kidswishnetwork.com
Locks of Love
http://www.locksoflove.org/
Make a Child Smile.org
http://www.makeachildsmile.org
Make A Wish
http://www.makeawish.org
Songs of Love
http://www.songsoflove.org
Special Wish Foundation
http://www.spwish.org
Starbright World
http://www.starbright.org
Sunshine Foundation
http://www.sunshinefoundation.com
The Marty Lyons Foundation
http://www.martylyonsfoundation.org

Scientific Journals & Medical Organizations

 

American Academy of Dermatology
http://www.aad.org
Provides patients & health care professionals with up-to-date information, treatment & management of skin diseases. There is access to find a local dermatologist.
American College of Rheumatology
http://www.rheumatology.org
Provides geographic membership directory to find a rheumatologist, patient information on general topics and disease specific information, and links to clinical trials.
Annals of Rheumatic Disease
http://ard.bmj.com/
New England Journal of Medicine
http://content.nejm.org/
The Journal of the American Medical Association
http://jama.ama-assn.org/
JAMA: The Journal of the American Medical Association is an international peer-reviewed general medical journal, published 48 times per year by the American Medical Association. JAMA is the most widely circulated medical journal in the world.

Sun Protection and Other Products

 

Aveda Allergen Free Make-up and Hair Products
http://www.aveda.com/index.tmpl?ngextredir=1
Beyond Bodi Heat
http://www.okamotousa.com
Covermark Cosmetics
http://www.covermarkusa.com
Offers cover up make up for lupus type rashes
Head Covers
http://www.headcovers.com
Offers nice head covers for those who have lost their hair due to chemotherapy
Heat Treat Warmers
http://www.warmers.com
Hot Headz Products
http://www.hotheadz.com
Medic Alert
http://www.medicalert.org
Smart Cover
http://www.smartcover.com
Offers cosmetics designed to cover up lupus rashes.
Solartex
http://www.solartex.com
Sun Precautions
http://www.sunprecautions.com
Sun Protected
http://www.sunprotected.com
SunGrubbies
http://www.sungrubbies.com
The Rocky Mountain Sunscreen Company
http://www.rmsunscreen.com
Offers sunscreen products for people who have to wear it daily, like lupus sufferers. Their products are PABA free, hypo allergenic, and Fragrance free.
Total Block
http://www.dermadoctor.com/search.asp
Offers SPF 60 cover up make-up for redness or butterfly rashes.

Traveling Abroad with a Chronic Illness

 

Bringing Medications or Filling Prescriptions Abroad
http://travel.state.gov/travel/tips/tips_1232.html#medications
Tips for traveling abroad from the Bureau of Consular Affairs
Diabetes Resources
http://www.miusa.org/ncde/tipsheets/diabetesresources
Tips for people traveling with insulin.
Guidelines for patients traveling with prescribed controlled drugs
http://www.painpolicy.wisc.edu/internat/travel.htm
When patients travel abroad with prescribed controlled substances including opioid pain medications, they need to consider two sets of law: 1) the law of the country they are in and 2) the law of the country or countries to which they are traveling.
MedicAlert Foundation TravelPlus Program
https://www.medicalert.org/join/TravelPlusDetail.htm?selected=MedicAlert+Membership_TravelPlus
MedicAlert Foundation is a nonprofit membership organization providing personalized medical identification bracelets and necklaces with a 24-hour emergency response and medical information service. MedicAlert members have access to TravelPlus, a travel assistance program that offers an array of medical, personal, and information services specifically designed to provide protection and care for all travelers, regardless of pre-existing medical condition or age.
Mobility International
http://www.miusa.org/ncde/tipsheets/medications
Tips for traveling Internationally with medications
The Center for Disease Control and Prevention
http://wwwnc.cdc.gov/travel/
The CDC`s website on foreign travel for those with chronic illnesses and disabilities.
Transportation Security Administration
http://www.tsa.gov/travelers/airtravel/specialneeds/editorial_1059.shtm
The TSA`s site goes over the rules for people with disabilities and their medications.
Web Sites of Foreign Embassies in the U.S.
http://www.state.gov/s/cpr/rls/dpl/32122.htm
A listing of U.S. Foreign Embassies and their contact information, in order for you to inquire about medication standards and more.

One-to-One Networks

There are many geographical areas within the states of Michigan and Indiana where lupus patients and their loved ones are not served by an organized support/educational group. This is evidenced by the number of calls and emails that the Michigan Lupus Foundation receives from individuals in these areas.

No one can truly understand how a person with lupus or their significant other feels as much as one who “walks the walk.” How isolating it can be to have this disease and not have someone with whom to share one’s feelings. How frightening it can be to be diagnosed with this chronic illness and not have anyone with whom to talk and cry. Talking to someone who truly understands can allay fears, concerns, frustrations, and even misinformation. Venting and sharing provides validation and normalization. How comforting it is to have the opportunity to share one’s feelings with someone who understands and who lives in the same geographical area.

We are proud to have a program entitled “The One to One Support System.” Individuals from areas that do not presently receive direct support are being contacted from our membership roster and notified of this exciting program. If you are interested, you would be asked to email or call us. A set of guidelines would be presented which would require a written agreement and permission to provide your name and phone number/email address.

Once the above is completed, each participant will receive other interested member’s names including their email addresses; and/or phone numbers. It would be the participant’s responsibility to initiate a phone call. The support person would continue to email or phone and/or set up a face-to-face visit with either one, some or all. Participants will be advised that every individual contacted may not necessarily be a good fit.

If you are interested in participating, please call 800-705-6677, or email Lisa Radtke at lisa@milupus.org.

Community Resources

Particularly in these difficult economic times, people are seeking ways to obtain:

food, clothing, subsidized housing, furniture, car repairs, ramping and other home modifications; help with utility costs; child care and equipment, and durable medical equipment, such as wheelchairs, walkers, and canes.

Others are seeking information about how to obtain:

legal advice; assistance with Medicaid; Social Security Disability; health insurance, problems with domestic violence as well as substance abuse problems.

If medication is unaffordable, and the patient meets the criteria, we have learned that every pharmaceutical company has an indigent/benefit program that will provide the prescribed medication at little or no cost to the patient. The physician, not the patient, must complete a form from the pharmaceutical company, and submit it. Hopefully, if the individual meets all criteria, he/she should receive the medications shortly. One of our volunteers who has lupus and no health insurance or prescription coverage is currently receiving a 90-day supply of a medication that retails for $900. The volunteer receives it at no charge.

For those with no health insurance, we have located free medical clinics and oftentimes free dental care in most areas of the country. While free medical clinics do not generally have specialists such as a rheumatologist, the patient can obtain basic medical care. Some of these clinics have a sliding scale and some do not.

While the Michigan Lupus Foundation office does not receive as many calls regarding resources for mental health care, the office staff has undergone training on specific questions to ask the caller and how to direct that individual to get the help they may need.

If you need help finding a resource in your community, please call the office at 800-705-6677.