 1st Annual Bowl & Brews Event!
On Saturday, March 17, 2018 (St. Patrick's Day) we will be hosting our 1st Annual Bowl & Brews fundraising event! 03/17/2018 at 5:00pm - 03/17/2018 at 8:00pm Hall of Fame Silver Lanes Bowling 748 Silver Lane East Hartford, CT
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When a family member is stricken with leukemia or another blood-related disease, a bone marrow transplant is sometimes recommended as the best chance for a cure. Usually, family members are tested first to determine if one of them would be a suitable donor. RBF can help you organize a successful drive through a variety of ways, including:
Fundraising can be hard work, but should be fun, and is a lot easier with many hands! There are many factors that go into planning and implementing a successful fundraising effort and part of the key to fundraising is coming up with ideas for events that people will support. We’re happy to share our fundraising tips and work with you to fundraise on our behalf. Set your fundraising goalsTalk about why you want to hold a fundraiser, how much money you feel you can realistically raise, and who will benefit from your efforts. If you fundraise for The Rob Branham Foundation, the funds will be used to help families facing leukemia and other blood cancers. Decide what type of fundraising event you’ll hold. At RBF, we believe that fundraising should be FUN – we’ve compiled a list of suggestions, which we’ve grouped into three main categories, that might get your thoughts in gear! selling productsWhether you sell a product that is commercially-produced or have something designed especially for your group or cause, the successful sale of any product depends, in part, on how many people will do the selling, and how good they are at selling the product. Some products you might consider selling including candy bars, tins of assorted candies, lollipops, flowers, potted plants, wreaths, decorations, coupon books (created with local businesses), wrapping paper, greeting cards, stationary, calendars, collectibles, or anything you may have created especially for your group. social EventsHolding a successful social event is often determined, in large part, by the effectiveness of the publicity of the event (which we will help you do if you fundraise for us!). Some event ideas include dances (1950’s sock hops, big band style music, holiday-themed events), dinners, wine tasting or winery tours, bowling & arcade nights, craft beer tastings, ‘cook-offs’ (such as chile, pasta, cheesecake or other dessert, macaroni & cheese, etc.), ice cream socials, chocolate-lovers feast, pancake breakfast, movie events, or music events (such as Battle of the Bands or Karaoke night). athletic eventsYou don’t have to run marathons to raise money for a good cause! A wide variety of both competitive and non-competitive athletic events are often held to raise money. Some ideas include 5K walks, 5K runs, rollerblading, bike riding, canoe or kayak paddling, team sports such as basketball or baseball, individual sports such as tennis or racquetball, or even intellectual sports such as chess or Scrabble. Also, friendly competition between two community groups is always fun! Online fundraisingWith many of our fundraising ideas, we can work with you to use our online fundraising platform to handle event registration and management, peer to peer fundraising and crowdfunding, and communicating with your participants. By working with The Rob Branham Foundation (a registered 501(C)3 public charity), the donations your participants make to your event are tax deductible! Fundraising Tips1. Form a fundraising team composed of people who will oversee different aspects of the process, as well as a team captain who will coordinate everything.
2. Create a Task and Timeline chart. Organizing and keeping track of all the tasks that have to be done, and when they have to be done by, can be a lot easier if you chart it all out. Think of all the things that have to be done concerning the event venue, event sponsorships, ticket pricing /registration, activities that will take place during the event, event publicity, day-of-event set up and running the activities, and event follow-up. The more you can clearly identify the tasks and chart them out, the more likely you’ll be to get them all done, and the easier it will be to ask people to help. 3. Identify support you’ll need and who you can ask for help. Does your fundraising team have members who are good at using social media? Will you be looking for sponsorships to help cover costs of putting on the event? If so, what will encourage potential sponsors to help? Do you need a graphic designer? An event photographer? How will you find good support (especially if they’ll volunteer their services)? 4. Celebrate and debrief after your event. We learn so much from the process of planning and holding a fundraising event that it’s a good idea to debrief shortly after it’s over to discuss what worked well and what you might do differently if you hold another fundraising event. Just as importantly, it’s good to celebrate the efforts of all those who contributed! Myeloproliferative diseases is a term used for a cluster of illnesses. These diseases are when the bone marrow creates more red/white blood cells or platelets then the body needs. Polycythemia vera, essential thrombocythemia, and primary myelofibrosis together comprise the majority of myeloproliferative diseases.
The total number of people living with myeloproliferative diseases (prevalence rate) in the US is estimated to be 29,5709. This estimation is based on 2010 information. In the US Medicare population, 53.2% of patients with essential thrombocythemia (ET) survive after 5 Years. This means out of 100 patients with essential thrombocythemia (ET), about 53 patients have survived the disease for 5 years. In the US Medicare population, 53.1% of patients with polycythemia vera (PV) survive after 5 Years. This means out of 100 patients with polycythemia vera (PV), about 53 patients have survived the disease for 5 years. In the US Medicare population, 18.2% of patients with myelofibrosis (MF) survive after 5 years. This means out of 100 patients with myelofibrosis (MF), about 53 patients have survived the disease for 5 years. Risk Factors There are certain risk factors that can increase the chances of having Myeloproliferative Diseases.
Diagnosis
There are certain symptoms and signs showing that a patient may have myeloproliferative disease. Patients may have anemia, shortness of breath with activity, loss of strength or tiredness, paleness, reduction in hunger, prolonged bleeding from minor cuts due to low platelet counts, purpura-black/blue pinpoint marks on the skin where bleeding has occurred under the skin, sinus-skin/urinary infections owing to a reduced number of low white blood cells that fight infection. Treatment Options Myeloproliferative disease typically cannot be cured. Treatment typically tries to fix the irregular blood tests. If a patient has no symptoms, with a doctor’s consultation, the patient may decide to take the watchful waiting approach. This means the patient will not be on treatment but they will get frequent evaluations and undergo diagnostic checks to monitor the progress of their disease.
References: “Chronic Myeloproliferative Neoplasms Treatment (PDQ®)–Patient Version.” National Institutes of Health National Cancer Institute, 2019. https://www.cancer.gov/types/myeloproliferative/patient/chronic-treatment-pdq. “Prevalence.” MPN Research Foundation, 2019. https://www.cancer.gov/types/myeloproliferative/patient/chronic-treatment-pdq. “Survival Patterns in United States (US) Medicare Enrollees with Non-CML Myeloproliferative Neoplasms (MPN).” Price et al. 2019. https://journals.plos.org/plosone/article?id=10.1371%2Fjournal.pone.0090299. “Myeloproliferative Neoplasms” Cancer Network-Oncology, 2019 https://www.cancernetwork.com/cancer-management/myeloproliferative-neoplasms/page/0/2 “Myeloproliferative Disorders Signs and Symptoms” University of California San Francisco, 2019 https://www.ucsfhealth.org/conditions/myeloproliferative_disorders/signs_and_symptoms.html. “Treatment Options” Seattle Cancer Care Alliance, 2019. https://www.seattlecca.org/diseases/myeloproliferative-neoplasms-mpn/treatment-options. Web links about Myeloproliferative Disorders Chronic Myeloproliferative Neoplasms Treatment (PDQ®)–Patient Version https://www.cancer.gov/types/myeloproliferative/patient/chronic-treatment-pdq Overview of Myeloproliferative Disorders https://www.merckmanuals.com/home/blood-disorders/myeloproliferative-disorders/overview-of-myeloproliferative-disorders Drugs Approved for Myeloproliferative Neoplasms https://www.cancer.gov/about-cancer/treatment/drugs/myeloproliferative-neoplasms Chronic myeloproliferative disorders https://rarediseases.info.nih.gov/diseases/9319/chronic-myeloproliferative-disorders Myelodysplastic syndromes are a cluster of diseases produced by dysfunctional or irregular blood cells. Myelodysplastic syndromes arise when there are irregularities in the spongy areas of the bones where blood cells are created, known as the bone marrow. Myelodysplastic syndromes are found in about 10,000 people per year in the US.
Based on the risk group (revised International Prognostic Scoring System (IPSS-R) risk groups) of a patient’s specific disease, the median survival period for patients can range from 8.8 years (very low risk) to less than a year (very high risk). A patient should discuss their risk group with their provider to get a median survival period specific to them. Median survival is a way to determine the potential results of a disease. It is the time after diagnosis in which 50% of patients are still alive and 50% have passed. It is a middle value. Fifty percent of the patients will live longer than the median survival period, and 50% of the patients will not live past the median survival period. Risk Factors There are factors that increase the chances of having Myelodysplastic Syndrome.
The symptoms associated with Myelodysplastic Syndromes include the following: feelings of tiredness, shortness of breath, uncharacteristic pastiness/paleness due to anemia (low blood cell count), uncommon bruising/bleeding due to low platelet counts in the blood, petechiae (tiny spots on the skin caused by bleeding under the skin), repeated infections due to leukopenia (a low number of white blood cells in the blood). Diagnosis If a doctor thinks a patient has myelodysplastic syndrome, s/he may conduct tests to confirm a diagnosis. The tests could include several things.
If a patient has no symptoms, with a doctor’s consultation, the patient may decide to take the watchful waiting approach. This means the patient will not be on treatment but they will get frequent evaluations and undergo diagnostic checks to monitor the progress of their disease.
“Myelodysplastic Syndromes Treatment (PDQ®)–Health Professional Version.” National Institutes of Health National Cancer Institute, 2019. https://www.cancer.gov/types/myeloproliferative/hp/myelodysplastic-treatment-pdq#_1 . “Survival Statistics for Myelodysplastic Syndromes.” American Cancer Society, 2019. https://www.cancer.org/cancer/myelodysplastic-syndrome/detection-diagnosis-staging/survival.html . “Myelodysplastic syndromes.” Mayo Foundation for Medical Education and Research, 2019. https://www.mayoclinic.org/diseases-conditions/myelodysplastic-syndrome/symptoms-causes/syc-20366977 Web links about Myelodysplastic Syndromes Patient education: Myelodysplastic syndromes (MDS) in adults (Beyond the Basics) https://www.uptodate.com/contents/myelodysplastic-syndromes-mds-in-adults-beyond-the-basics Myelodysplastic Syndromes Treatment (PDQ®)–Patient Version https://www.cancer.gov/types/myeloproliferative/patient/myelodysplastic-treatment-pdq Myelodysplastic Syndrome (MDS) https://www.merckmanuals.com/home/blood-disorders/leukemias/myelodysplastic-syndrome-mds Myelodysplastic syndrome https://medlineplus.gov/ency/article/007716.htm What Are Myelodysplastic Syndromes? https://www.cancer.org/cancer/myelodysplastic-syndrome/about/what-is-mds.html CML is a type of cancer that starts in the blood forming cells of the bone marrow and invades the blood. Leukemia cells tend to build up over time but many people don’t have symptoms for at least a few years. During that time, the cells can invade other parts of the body, including the spleen. CML can also change into the fast growing acute leukemia. Most cases occur in adults, and it rarely occurs in children.
CLL is one of the most common forms of leukemia in adults. One kind of CLL [early stage low and intermediate risk (described later)] grows very slowly and rarely needs to be treated. People with this type of CLL survive an average of 15 years or more. The other kind of CLL (high risk) grows faster and is more serious. People with this kind of CLL live an average of about 8 years.
AML is one of the most common types of leukemia in adults. The American Cancer Society’s most recent estimates are about 13,780 new cases in the US, mostly in adults. About 10,200 deaths will be from AML for the year 2012. The average age of a patient is about 67 and it affects more men than women. Although AML is a relatively rare disease, accounting for about 1.2% of cancer deaths in the US, its incidence is expected to increase as the population ages. AML progresses rapidly and is typically fatal within weeks or months if left untreated.
ALL is the most common type of cancer in children occurring between the ages of 2 and 5 years and adults over the age of 65. It is the most successfully treated childhood leukemia. In ALL, the DNA in the diseased cells is damaged and the cells cannot mature beyond the early stage in their life cycle. These immature (blast) cells reproduce very rapidly and take over the bone marrow so it cannot produce healthy blood cells and platelets. These low counts of disease fighting white cells can lead to infection, and bruising or bleeding from the low levels of platelets. Immediate treatment is required because of the rapid progression and accumulation of the malignant cells, which then spill over into the bloodstream and spread to other organs of the body.
The Leukemia Society
Information about treatments such as radiation therapy, chemotherapy, immunotherapy, and stem cell transplant, as well as clinical trials National Cancer Institute Contains information written in two formats, one for patients and one for health care professionals Memorial Sloan-Kettering Cancer Center Information about the treatment of all types of leukemias Acute Lymphocytic Leukemia (ALL) Acute Myelogenous Leukemia (AML) Chronic Lymphocytic Leukemia (CLL) Chronic Myelogenous Leukemia (CML) Dana-Farber/Brigham & Women's Cancer Center Information about the treatment of all types of leukemias: Acute Lymphocytic Leukemia (ALL) Acute Myelogenous Leukemia (AML) Chronic Lymphocytic Leukemia (CLL) Chronic Myelogenous Leukemia (CML) Cancer Treatment Centers of America Information about radiation therapy, chemotherapy, stem cell transplantation, biotherapy & immunotherapy, as well as complementary and alternative medicines. OncoLink Basic information about clinical trials. Clinical Trials |
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