Resource section for patients and their support systems: FOF’s (Friends of Fix)

Group Support Systems:

Cancer Care:
http://www.cancercare.org/

Cancer Support Community Nationwide:
http://www.cancersupportcommunity.org/Default.aspx

Summer of Hope Foundation:
https://www.facebook.com/SummerHopeFoundation

Creating a Legacy Contact on Facebook (someone in charge of your social media account):
https://www.everplans.com/articles/facebook-acknowledges-death-more-realistically-now-allows-users-to-name-a-legacy-contact

Documenting your final journey with “Last Days” (through Wayfarer Entertainment and Justin Baldoni):

http://www.wayfarer-entertainment.com/about/

Extremely helpful website on how to cope with loss: (from a friend of Marisa Guber):

http://www.welivewithoutyou.com/

ONE ON ONE SUPPORT:

The Shira Ruskay Foundation (support for people with terminal and chronic illnesses):
http://www.jbfcs.org/programs-services/jewish-community-services-2/shira-ruskay-center/#.VJzJrAAEM

Imerman Angels connecting people with similar Cancer Diagnoses: http://www.imermanangels.org/

A free site to update those on your progress privately or publicly:  http://www.caringbridge.org/

Dr. Joshua Davis (Oncology) Recommends:

UpToDate.com

Nursing Services:

MJHS Care and Nursing Services: http://www.mjhs.org/

Visiting Nurse Services of NY: http://www.vnsny.org/

National Healthcare Associates: http://www.nathealthcare.net/

Find My Nurse Nationwide: http://www.findmynurse.com/

Nationwide Nurse Network: http://thenursenetwork.com/home/nationwide-healthcare-staffing/

Maximum Health Care Nurse Service Nationwide: http://www.maximhealthcare.com/careers/nursing-jobs.aspx

Carelinx Find A Caregiver: http://www.carelinx.com/

Outerwear for Patient Care During Treatment:

Curewear Clothing line made for chemotherapy patients: http://www.mycurewear.com/           Alex Niles was diagnosed with Stage IV gastric cancer in the fall of 2013, at age 30. He is the founder of CureWear, a lifestyle apparel line designed to provide comfort for cancer patients during treatment, while inspiring their friends and family. A unique feature of CureWear for patients is its “invisible” port accessibility patch specifically designed for patients treated with a medical port. http://www.mycurewear.com/clothing/

curewear shirt

Alex is also writing a book geared towards younger cancer battlers, that sets forth his positive, activist approach to fighting the illness. His work has been featured in the New York Times, The Huffington Post, and Psychology Today.

Nutrition Resources Geared Towards the Ill:

A customized soup company founded by a cancer survivor. Tailor made soups and meals for those battling illness. Servicing NYC and shipping nationwide. Can be custom made (Vegan, Gluten Free etc.): http://www.rockintheladle.com/

LA Based Soup Detox and Nutrition Program. Servicing the Greater Los Angeles (delivery available upon location):http://www.soupelina.com/
http://www.soupure.com/

Residences for the ill and their support systems:

A long or temporary care residency associated with the American Cancer Society (NY):
http://www.cancer.org/treatment/supportprogramsservices/hopelodge/newyorkcity/new-york-city-about-our-facility

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Boston Live in Facility for Long Term Hospital Patients and their Families:
http://christophershaven.org/

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International support Julia’s House residence for the terminally ill:
https://juliashouse.org/

Beauty Resources for Cancer Empowerment:

http://www.beautyforcancer.org/
http://www.compassionatebeauty.com/
http://www.curediva.com/

Rona Wexler’s Caregiving Corner

Patients Bill of Rights to keep in mind:
http://www.cancer.org/treatment/findingandpayingfortreatment/understandingfinancialandlegalmatters/patients-bill-of-rights

Covers National organizations to help caregivers with web links.
http://www.medicareinteractive.org/page2.php?topic=counselor&page=script&script_id=1404

Links to other sites and discussions about communication, medical errors, support for caregivers.
http://www.theschwartzcenter.org/partnering-with-patients/patient-family-resources/support-family-caregivers/

Caregiving Resource Center including a support telephone line and sections on practical and informative resources from providing care, end of life care, legal and money matters, benefits and insurances, and how to locate local resources. www.aarp.org/caregiving.  

Site includes downloadable Planning Guide from early to later stages of care as a disease goes through different stages.
http://www.aarp.org/content/dam/aarp/home-and-family/caregiving/2012-10/prepare-to-care-lores.pdf

Pain Management Articles:

http://www.theatlantic.com/health/archive/2014/04/treating-chronic-pain-with-meditation/284182/
http://www.newyorker.com/science/maria-konnikova/pain-really-make-us-gain

Social Worker Resources:

National Social Workers Assistance Program:

Hospice and Palliative Care Guide:

http://hospicecare.com/ (national)
http://www.nationwidechildrens.org/hospice (national)
http://www.hospiceny.com/ (national)
http://www.nijh.org/ (national)
http://www.caringhospice.com/ (national)
http://www.hospiceandlifecarecenter.org/ (national)
http://activehospicecare.com/ (national)
http://www.nhpco.org (NY)
http://hospicenyc.org/ (NY)
http://www.hospicecarenetwork.org/ (NY)
http://www.vnsny.org/our-services/by-life-event/end-of-life-care/ (NY)
http://www.eldercareresourcecenter.info/hospice-care-seniors-new-york.php (NY)
http://www.skirballhospice.org/ (LA)
http://www.hospiceofgrace.com/ (LA)
http://www.losangeleshospiceservices.com/ (LA)
http://www.lmhpco.org/ (Southern US)

Home Care and Financial Care for Cancer Patients: 

http://www.medgift.com/
http://davidfosterfoundation.com/
http://www.wsj.com/articles/patients-turn-to-palliative-care-for-relief-from-serious-illness-1419288669
http://www.cancer.gov/cancertopics/factsheet/Support/home-care
https://www.caring.com/local/in-home-care
http://www.cancercare.org/financial
http://www.cancerfac.org/

National Support Groups For Caregivers: 

http://www.leezascareconnection.org/
http://chronicillness.meetup.com/
http://www.healingwell.com/

National Websites for Caregivers and Support Systems:

https://www.caring.com/support-groups/caring-for-a-spouse
https://www.caring.com/caregiver-wellness
http://www.psychologytoday.com/blog/turning-straw-gold/201401/not-do-list-caregivers-the-chronically-ill
http://www.pbs.org/inthebalance/archives/whocares/resources.html
http://www.apa.org/monitor/2011/03/ill-children.aspx
http://www.connecticutchildrens.org/healthinfo/parents/doctors-and-hospitals/caring-for-a-seriously-or-chronically-ill-child/
http://djournal.com/lifestyle/living-goodbye-hospice-provides-medical-emotional-support-terminally-ill-families/
http://www.todaysdietitian.com/newarchives/082508p68.shtmlhttp://www.griefnet.org/support/sg2.html
http://powertochange.com/discover/family/terminallyill/
http://www.wellspouse.org/caregiver-support/for-relatives-or-friends-of-spousal-caregivers.html
http://cms.carepages.com/CarePages/en/ArticlesTips/FeatureArticles/Contributors/Emotional-Healing-for-the-Terminally-Ill.html
http://www.hrrv.org/blog/volunteers/the-gift-of-presence-tips-for-visiting-a-terminally-ill-family-member-or-friend/
http://www.nhs.uk/CarersDirect/guide/kinds/Pages/terminallyill.aspx
http://psychcentral.com/blog/archives/2011/03/27/8-survival-tips-for-the-spouse-of-a-terminally-ill-person/
https://www.achievesolutions.net/achievesolutions/en/pge/Content.do?contentId=5780
http://www.med.umich.edu/yourchild/topics/chronic.htm
http://www.bandbacktogether.com/terminal-illness-resources/
http://www.cancer.net/navigating-cancer-care/advanced-cancer/caring-terminally-ill-child-guide-parents
http://www.aafp.org/afp/1998/0301/p935.html
http://invisibledisabilities.org/coping-with-invisible-disabilities/disability-benefits/finding-help/

http://tcjayfund.org/

Estate Planning:

http://www.bmcestateplanning.com/attorneys/alec-borenstein/

Resources From Cancer Advocate Robert Goldberg (Friend of Fixler):

Not for Profit Resource Sites to Improve Patient Care:

http://closingthegapnow.org
http://mylifeisworthit.org
http://www.futureofcancercare.com/

Patient Resource Book:

http://www.amazon.com/The-Patient-Will-See-You/dp/0465054749

Thought Catalog Essays on Supporting the Ill:

http://thoughtcatalog.com/lauren-anne/2014/08/what-its-really-like-to-be-chronically-ill/
http://thoughtcatalog.com/joslyne-decker/2014/10/10-things-you-should-stop-saying-to-chronically-ill-people-and-7-things-you-should-say/
http://thoughtcatalog.com/amy-waggoner/2014/11/5-people-you-meet-when-you-have-a-chronic-illness/
http://thoughtcatalog.com/gaby-dunn/2013/01/you-want-someone-who-will-be-with-you-when-youre-sick/
http://thoughtcatalog.com/nikki-starling/2015/01/me-myself-my-chronic-illness/

Thoughts the Terminally Ill Want Their Caregivers to Know:

http://www.huffingtonpost.com/2013/08/03/top-5-regrets-of-the-dying_n_3640593.html
http://awomanshealth.com/cancer-patients-want-you-to-know/
http://www.mollysfund.org/2014/01/10-tips-for-parents-living-with-chronic-disease/
http://www.xojane.com/issues/how-not-to-be-a-dick-to-your-sick-friend
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
http://chronicteenagetears.blogspot.com/
http://www.helpguide.org/harvard/dealing-with-a-loved-ones-serious-illness.htm
http://www.anapsid.org/cnd/coping/looksick.html
http://www.mayoclinic.org/healthy-living/end-of-life/in-depth/grief/art-20047491?pg=2
http://www.spine-health.com/blog/open-letter-a-person-chronic-pain
http://www.alpineguild.com/COPING%20WITH%20CHRONIC%20ILLNESS.html 

Transportation Services for the Ill and the Disabled:

http://www.disabledinaction.org/aar_guide.html

Food and Errand Delivery Resources for the Homebound (nationwide unless specified):

wunwun.com
taskrabbit.com
postmates.com
https://mobile.healthyout.com/
http://www.sendameal.com/nationwide_food_delivery
http://boxedgreens.com/
http://www.dinewise.com/
http://www.papasorganic.com/
http://www.tglorganic.com/
http://www.healthychefcreations.com/
http://www.veginout.com/
https://www.urbanremedy.com/
http://www.christineavanti.com/national-meal-delivery/
https://www.delivery.com/
https://www.foodydirect.com/
https://www.farmboxdirect.com/
http://www.seamless.com
http://www.rockintheladle.com/ (NY)
http://www.juicepress.com/ (NY)
http://www.freshdirect.com (NY)
https://www.organicavenue.com/ (NY)
http://www.sakaralife.com/ (NY)
http://liquiteria.com/ (NY)
http://www.getcleanly.com/ (NY based laundry on demand service)
http://www.pinkdot.com/  (LA)
http://www.soupure.com/ (LA and nationwide shipping coming soon)
http://www.soupelina.com/ (LA)
http://paleta.com (LA)