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Bowl and Brew

2/19/2018

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1st Annual Bowl & Brews Event!​

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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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Bone Marrow Testing Drive

2/12/2018

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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:
  • Helping you find the nearest donor center for your drive (which can typically be found at www.bethematch.org).
  • Determine the type of setting in which your drive will be: at a corporate workplace? At a community event? Is it its own event?
  • Who will fund the drive? Testing costs vary, so you should contact the nearest donor center to find out what the cost per donor will be.
  • Choose several possible dates. The date you want has to be coordinated with the schedule of the donor center and other involved in its sponsorship.
  • Organize volunteers to help out at the drive.
  • Approach local business about donating small items that may be given as tokens of appreciation to those who are tested.
  • RBF will help you publicize the drive, as well, to ensure the maximum exposure for a successful event.
  • RBF will provide you with literature and information about bone marrow testing available for the day of the drive
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Fundraising tips

2/12/2018

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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 goals

Talk 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. 

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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 products

Whether 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 Events

Holding 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 events

You 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 fundraising

With 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 Tips

1. 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! 
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About MPD (Myeloproliferative Disease)

2/12/2018

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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.
  • Genomic causes. Myeloproliferative Diseases are not thought to be heritable. However, there is some data to show that some people may be inclined to develop myeloproliferative diseases based on their own personal genetic codes.
  • Factors present in the environment.  Exposure to radiation and petrochemicals (like benzene and toluene) have been linked with the development of myeloproliferative diseases.

Diagnosis
  • Blood tests.  If your doctor thinks that you have a myeloproliferative disease, s/he may order blood tests that will take a small amount of blood to look at your cells. Your doctor may order more test if they see abnormal initial blood test results.
  • Bone marrow biopsy. A small amount of bone marrow is taken from the bone, typically from the hip bone, with a needle. The sample taken from the bone is called a biopsy. In a laboratory, the biopsy is examined for malformations in the cells
Symptoms
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.
  • Phlebotomy. This technique is used to decrease the number of red blood cells from the body. A large volume of blood is removed to accomplish this.  It can help with the symptoms connected to having a high number of red blood cells.
  • Cell-Reducing Medications. Patients who are at higher risk for clotting and who have higher red blood cell counts may require these drugs. The drugs reduce the number of red blood cells that the body makes or limit their release from the bone marrow. Examples include hydroxyurea (Hydrea), Interferon-alpha and Anagrelide (Agrylin).
  • Supportive Care. In the advanced stages of the disease or when the bone marrow is not making normal blood cells treatment may include drugs and transfusion. There are several examples of drugs used for supportive care. For example growth factor erythropoietin (EPO) expands the number of red blood cells, growth factor granulocyte colony-stimulating factor (G-CSF) expands the number of white blood cells. Also transfusions can increase the number of red blood cells/platelets.
  • Chemotherapy. Chemotherapy can be presented by injection, by oral delivery, or by injection into the spinal fluid.  The drugs help manage irregular blood cells.
  • Transplantation. Those with severe/advanced myeloproliferative disease can be treated with a transplant of bone marrow.
  • Drugs targeting certain gene aberration.  The drugs stop abnormal proteins linked to those certain gene mutations. Examples of these drugs include imatinib (Gleevec) and ruxolitinib (Jakafi).
 
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


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About MDS (Myelodysplastic Syndrome)

2/12/2018

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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.
  • Older age. Patients older than 60 have a higher risk of having the disease compared to younger patients.
  • Previous cancer treatment. Chemotherapy/radiation therapy, which are generally used to treat cancer, can lead to a higher rates of myelodysplastic syndromes.
  • Exposure to chemicals. Some substances have been associated with myelodysplastic syndromes. These substances include cigarette smoke, chemicals used to kill insects and manufacturing compounds, such as benzene.
  • Exposure to heavy metals. Those with a history of contact with heavy metals like lead and mercury have a higher risk of having Myelodysplastic Syndromes.
Symptoms
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.
  • Blood tests. A doctor might collect a small amount of blood. They will look at how many red/white cells and platelets a patient has. They will also look for irregularities in blood cells to try and detect disease.   
  • Bone marrow biopsy. A small amount of bone marrow is taken from the bone, typically from the hip bone, with a needle. The sample taken from the bone is called a biopsy. In a laboratory, the biopsy is examined for malformations in the cells.
Treatment Options
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.  
  • Blood transfusions. This procedure can be used to replenish red/white blood cells or platelets.
  • Growth factors. These drugs can help build up more blood cells in the body. They are artificial components that mimic of the body’s natural bone marrow factors.
Examples of growth factors that add to the number of red blood cells are epoetin alfa (Epogen, Procrit) or darbepoetin alfa (Aranesp). They can help reduce the number of transfusions a patient may need.  Examples of growth factors that add to the number of white blood cells are filgrastim (Neupogen, Zarxio). White blood cells help the body fight off infections.
  • Medications that stimulate blood cells. These medications help promote the maturation of blood cells. These drugs can lead to a better quality of life for patients with certain myelodysplastic syndromes and they lower the chances of getting certain types of leukemia (acute myelogenous leukemia). Examples of these medications include azacitidine (Vidaza) and decitabine (Dacogen)
  • Drugs that stifle the immune system. Certain medications can muffle the immune system. These medications can potentially reduce the number of blood transfusions that are needed for certain myelodysplastic syndromes.
  • Drugs that focus on a particular genetic abnormality. There are drugs that target a specific gene aberration called isolated del(5q). A drug that targets this specific mutation is called lenalidomide (Revlimid).
  • Bone marrow/stem cell transplant. Chemotherapy drugs destroy the aberrant blood cells in the bone marrow. The aberrant cells are then swapped with healthy transplanted cells from a donor.
  •  
References:
“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
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About CML (Chronic Myelogenous Leukemia)

2/12/2018

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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.

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About CLL (Chronic Lymphocytic Leukemia)

2/12/2018

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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. 

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About AML (Acute Myelogenous Leukemia)

2/12/2018

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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.

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About ALL (Acute Lymphocytic Leukemia)

2/12/2018

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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.

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treatment Resource Links

2/12/2018

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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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