What are Swag Bags? How you can help…

Many have asked…

What are Swag Bags? They are bags delivered to chemotherapy patients at Children’s Hospital of Philadelphia and they consist of eight comfort items…

Chapstick • Blankets • Body Lotions • Nail Polish • Soft tissue packs • Earphones/earbuds • Blank Journal • Colorful pens

All Swag Bags are delivered directly to CHOP Salon Services once assembled. They are delivered often during salon treatments for patients undergoing Chemotherapy by CHOP Salon Services. Many kids and teens receiving chemo experience:

Discomfort and Pain • Skin Damage or Changes • Hair Loss and Scalp Sensitivity • Mouth, Gum, and Throat Sores • Gastrointestinal Problems • Urinary System Problems • Central Nervous System Problems • Decreased Blood Counts • Increased Risk of Infection

The contents of the swag bag help patients and their families cope with the early stages of treatment and the side effects.

Diseases treated with Chemotherapy
Cancer Related Disease: • Acute Lymphoblastic Leukemia • Retinoblastoma • Leukemia • Rhabdomyosarcoma • Soft Tissue Sarcoma • Melanoma • Neuroblastoma • Brain Tumors • Germ Cell Tumors • Non-Hodgkin Lymphoma • Nasopharyngeal Carcinoma

Non-Cancer Related Diseases • Rheumatoid Arthritis • Lupus • Multiple Sclerosis • Non-Cancerous Tumors • Neurofibromatosis

You can help by making a monetary donation to The LIV Foundation or by scheduling an in-kind donation of any of the contents listed above. NOTE: All in-kind donations are required to be in their original packaging and are subject to inspection.

Most donations come to us throughout the holiday season and are delivered to CHOP in batches of one-hundred bags at a time by The LIV Foundation Volunteers. Help us pay it forward to this incredible institution that has helped so many loved ones in our community! If you have questions or want to set up a donation pickup, please email us at thelivfoundation@gmail.com.

Thank you for reading! Have a wonderful Thanksgiving and Holiday Season!

What we do…

via What we do…

Host a fun party and help a great cause in 8 simple steps…!

people drinking liquor and talking on dining table close up photo — Photo by Helena Lopes on Pexels.com

Host an evening of care!

What is an evening of Care? Typically these events involve a group of families and friends who gather to serve a cause and have fun. They can also be held during the day as a lunch or breakfast meeting and be called a Day of Care or “Helpy Hour” too! Think of it as a party with a positive social impact!

You can organize a day or evening of caring to make a difference and deepen the connections you have within your family, workplace and/or community by organizing a Day or Evening of Caring event!

A small community hosted an Evening of Care this past year with the intention of honoring an incredibly special person whom they care for deeply. They had fun and by following the eight steps outlined below, they collected and assembled 54 Swag Bags for CHOP! Read on… you can do this too!

Step 1 Determine who will be involved. Family, friends, community associations, teams and work groups are among the most common participants in these events. However any group motivated by a cause and willing to gather can work well.

Step 2 Ask the community first. Provide background information to your group, educate them about the community’s connection to your cause.

Step 3 Describe the needs and the goals. Take time to confirm the needs of the organization, family or person in need. Once you feel you have accurately assessed the need, determine what your think your team can contribute and make sure everyone knows what the goal is!

Step 4 Plan out the logistics. Write out how you will set up your event. What items will you collect? Will there be food and refreshments? Who will prepare the food? What will your venue be? Do you want to involve children? If necessary how will you organize and assemble any donations or gifts you might be collecting?

Step 5 Determine the division of labor. This is a great place to leverage technology. There are free services like Signup Genius that can help you track RSVPs and attendees’ commitments in the effort to support your cause. You may need to key in all the items needed to help friends who are interested easily assess what they can bring. You may benefit from proactively making suggestions that will help your team divide up the quantities of items needed to help ensure you do not have too many duplicates of any one item.

Step 6 Provide some friendly reminders. At the very least send an email reminder to people who volunteered to attend 4-5 days before your event. Include details regarding what they committed to bring to the event.

Step 7 Take time to plan out a coordinated assembly line if you are collecting items that consist of multiple components. Brace yourself for a whirlwind of activity but be sure to make the conscious effort to have fun. Think through how they will be collected, assembled and/or packaged.

Step 8 Plan for how you will deliver your donations.

This same process can be applied to support many other causes too…!

Helpful hints…

Have a plan when talking to people about the project. Have three bullets ready to help get your point across to volunteers and friends.

Allow 1-3 days before scheduled delivery date to allow time to double-check and ensure that each bag is complete.

“We rallied together as a community to honor our friends and assembled over 50 Swag Bags for children undergoing chemotherapy treatment at Children’s Hospital of Philadelphia.” -Kristen, LIV Foundation Volunteer

Want to learn more about how you can help The LIV Foundation? Call us at 484-808-5481, email us at thelivfoundation@gmail.com, or visit us online at www.thelivfoundation.org and follow us on Facebook!

If you would like to support us, consider running an evening of care and help us fulfill some Swag Bags for chemotherapy patients at Children’s Hospital of Philadelphia. For an outline of the contents of the swag bags and how they benefit families in need check out our recent blog post What We Do…!

If you commit to the effort, collect and assemble the contents while having some fun with friends, we will help you! We’ll even pick them up and deliver them for you!

What we do…

What we do… We are a fully volunteer run 501c3 organization that does three things:

Build awareness about pediatric illness
Build awareness around the importance of self-care and support for families of children who have life-altering illnesses
Deliver Swag Bags to children undergoing chemotherapy treatments at CHOP

What are Swag Bags? They consist of eight comfort items…

Chapstick • Blankets • Body Lotions • Nail Polish • Soft tissue packs • Earphones/earbuds • Blank Journal • Colorful pens

The contents of the swag bag help patients and their families cope with the early stages of treatment and the side effects.

Non-Cancer Related Diseases • Rheumatoid Arthritis • Lupus • Multiple Sclerosis • Non-Cancerous Tumors • Neurofibromatosis

Why CHOP? There is a more personal aspect to the story for many in our circle but simply put, it is an amazing institution that helps a lot of families in our community.

Over 19-thousand Pennsylvania children receive in-patient care at CHOP each year
Over 7-thousand children from New Jersey receive in-patient care at CHOP each year
Locally, just under 400 children from the Pocono area (where we are based) and just under 600 in the Lehigh Valley receive in-patient care at CHOP each year.
They are an amazing institution! They handle the most complex cases that are referred by our local hospitals and the care they give is second to none.

If you would like to learn more about us check out our website at http://www.thelivfoundation.org or look for us on Facebook!

If you are interested in learning about how you can have a great time and help us serve our mission, check out the our recent post that outlines how you can host a Helpy Hour with your friends, your team or your family!

https://livfoundationblog.wordpress.com/2018/10/26/host-a-fun-party-and-help-a-great-cause-in-8-simple-steps/

Save the Date! The LIV Foundation will host a Foot Golf outing on October 13, 2018

via Save the Date! The LIV Foundation will host a Foot Golf outing on October 13, 2018

Save the Date! The LIV Foundation will host a Foot Golf outing on October 13, 2018

Save the Date! On October 13, 2018 The LIV Foundation will host a Foot Golf outing at Terra Greens Golf Course in East Stroudsburg, PA.

If you like soccer and you like golf, you will love Foot Golf! This game is a great way to spend time with friends and family! Prizes, food, refreshments and other “swag” will be available at the event! The course at Terra Greens provides beautiful views and a wonderful environment for your enjoyment while you play.

Not interested in playing but like our cause…? That’s fine too… We are looking for volunteers and sponsors! As a sponsor you will gain brand exposure and support a great cause!

The LIV Foundation Foot Golf Tournament is a fundraiser that will provide care bags (AKA “Swag Bags”) for children undergoing chemotherapy treatments at Children’s Hospital of Philadelphia (CHOP). Patients treated by CHOP Salon Services will receive personal care items (i.e. lotion, blankets, ear buds, a journal, etc.) within each swag bag. Bag construction and delivery will be funded in part by this event. CHOP Salon Services treats nearly fifty patients per month who come through pediatric oncology treatments.

Save the Date V111 The LIV Foundation is a non-profit organization that supports families with children facing life changing illnesses such as cancer.

All proceeds will go to benefit Children’s Hospital of Philadelphia.

More information to come – in the meantime save the date!

If you have questions, please email us at thelivfoundation@gmail.com. Also, please like and follow us Facebook for updates on the event!

The Journey of Care: A definition of terms…

At The LIV Foundation we refer to “The Journey of Care” as the period of time following a child’s diagnosis that alters their life and that of their family. Each family that begins this journey has a unique experience but all are met with significant challenges.

The Journey of Care is, in most cases a treacherous one (see our first ever blog post The Quiet Warrior Next Door for more details if interested). The destination is often unknown; there are often no maps and no GPS. Families never volunteer for the trip and begin the journey with little to no training. The cost of the trip and duration are unknown. Most families need to keep working and continue to tend to the mundane details of life while on the journey. Some families have large groups of friends and extended family that take much of the journey with them while others experience a more solitary experience on the journey.

The journey ends for some with the relief and joy associated with a remission or cure. For others, the journey ends with terrible tragedy and sadness. For some, the journey does not end before their own life’s journey on his earth is through.

All on the journey are remarkably resourceful and all long for a time when their child is healthy, happy and at peace. All on the journey deserve respect.

#thejourneyofcare

Be Kind Everyone You Meet is Fighting a Hard Battle – Especially those on The Journey of Care Fighting a Rare Disease

You may have heard the term “Orphan Disease” and wondered what in the world could that mean? Unless you were able to research the term and take some time to read about it, or unless you know someone who lives with an Orphan Disease, you still may be curious. Orphan Diseases are rare diseases that affect fewer than 200,000 people in the United States. Many are often chronic, progressive, debilitating, and life-threatening. Most are genetic in origin, thus they disproportionately affect children.

There are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day due to advances in our understanding of the human genome and commensurate advances in our ability to diagnose genetic disorders.
30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population. Similar to the United States, Europe has approximately 30 million people living with rare diseases. It is estimated that 350 million people worldwide suffer from rare diseases. If all of the people with rare diseases lived in one country, it would be the world’s 3rd most populous country according to the Global Genes Alliance in Rare Disease web site.
In the United States, a condition is considered “rare” it affects fewer than 200,000 persons combined in a particular rare disease group. International definitions on rare diseases vary. For example in the UK, a disease is considered rare if it affects fewer than 50,000 citizens per disease.

Here are some additional facts about rare diseases publish by Global Genes, The Kakkis EveryLife Foundation, The National Institutes of Health and Pharmaceutical Research and Manufacturers of America:
• 80% of rare diseases are genetic in origin, and thus are present throughout a person’s life, even if symptoms do not immediately appear
• Approximately 50% of the people affected by rare diseases are children
• 30% of children with rare disease will not live to see their 5th birthday
• Rare diseases are responsible for 35% of deaths in the first year of life
• The prevalence distribution of rare diseases is skewed – 80% of all rare disease patients are affected by approximately 350 rare diseases
• According to the Kakkis EveryLife Foundation, 95% of rare diseases have not one single FDA approved drug treatment
• During the first 25 years of the Orphan Drug Act (passed in 1983), only 326 new drugs were approved by the FDA and brought to market for all rare disease patients combined
• According to the National Institutes of Health Office of Rare Disease Research, approximately 6% of the inquiries made to the Genetic and Rare Disease Information Center (GARD) are in reference to an undiagnosed disease
• Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease
• The National Institutes of Health estimates that 50 percent of people affected by rare diseases are children, making rare diseases a particularly deadly and debilitating concern for children worldwide. Rare diseases are responsible for 35 percent of deaths in the first year of life and 30 percent of children with a rare disease will not live to see their fifth birthday.

The RARE List™ is comprised of approximately 7,000 different rare diseases and disorders affecting more than 300 million people worldwide. Additionally, here is a List of Genetic Disorders published by About Kids Health. Therein you will see diseases that may be less familiar to you like Batten Disease, Duchenne muscular dystrophy and Neurofibromatosis among many others.

Many families that are on The Journey of Care, with a child who has a rare disease, are left to fend for themselves. Found with very little support in some cases due to less mature condition-specific support network development, little information is available and in many cases these families must raise significant funds through their own efforts as they grasp for every opportunity to help their child. In a recent Charity Miles interview, Gen Gurkoff talked with Julia Vitarello in Boulder, Colorado. Julias daughter Mila has Batten Disease, a rare and fatal neurodegenerative disease. The description of Julia journey in this interview is at times very difficult to listen to but very enlightening. Her description of the experience her family went through — from concern, to shocking diagnosis, to their hunt for a treatment and fund raising effort is inspiring.

They have a ray of hope because, they were able to get a clinical trial approved through Harvard University in Boston Children’s Hospital and are in the process of raising the money in order for the trial to go forward. If you’re as moved by their story as I am, you may want to visit their GoFundMe Page. They need to raise $700K by December 20th to make this happen for Mila and they are getting very close to their goal.

If you know someone on a similar journey it may be helpful to point them to the list of Medicines in Development for Rare Diseases.

Tom Nieman is a Founder and President of The LIV Foundation and a financial services industry veteran. The best place to reach Tom is active on LinkedIn or you can email him at tommynieman@gmail.com

If you want to learn more, need help or know someone who needs help check out the following resources:

The Children’s Hospital of Philadelphia Department of Social Work and Spiritual Care: http://www.chop.edu/centers-programs/social-work-and-spiritual-care/about

The LIV Foundation: http://www.thelivfoundation.org/

The Hero Sherpa

There are times when we encounter people in this life that possess such grace and strength it is humbling. We have had the good fortune of having many people of this character our life. Parents of children with life-altering illness often fit this make-up.

Often these parents don’t view themselves as heroes. They consider their child who is struggling with illness, pain and fear of the unknown at young ages the hero in their story.

Yet, they are indeed heroes. They fight overwhelming odds, make significant sacrifices and help innocent children survive and thrive despite the condition or illness that is threatening their very existence. They guide Hero young souls along a treacherous journey.

It is these heroes that The LIV Foundation exists for. When we come across resources that can help we share them with the intent of helping parents of children with life-altering illnesses live their lives well when on the journey of care with their sick child.

Recently we came across a blog called the Joyful Journey Mom. Jenni claims it started out as their adoption journal blog and over the last four years it has morphed into a blog about special needs, adoption and her life. Jenni and her husband have 6 children by birth and adoption. We have children with disabilities. The information Jenni has organized within her blog is amazing and can help families who need assistance.

Wish Organizations, Grants for Medical Equipment/Medical Assistance, Free Gifts and Services, even list of Free Places to Go and Some tips when applying for grants are all outlined in her post called, Ultimate List of Grants and Resources for Families with Special Needs.

If you are looking for ideas that can help you stay organized and effective while advocating for your child while on the journey of care there is even a blog post where Jenni describes How to make a personalized advocacy toolkit for your child.

This is such a great resource we simply had to share. Please share with those heroes in your circle if you think it can help.

Tom Nieman is a Founder and President of The LIV Foundation and a financial services industry veteran. The best place to reach Tom is on LinkedIn at https://www.linkedin.com/in/tomnieman/ or email at tommynieman@gmail.com

If you want to learn more, need help or know someone who needs help check out the following resources:

The Children’s Hospital of Philadelphia Department of Social Work and Spiritual Care: http://www.chop.edu/centers-programs/social-work-and-spiritual-care/about

The LIV Foundation: http://www.thelivfoundation.org/

Thank You Veterans

Military families deserve to be revered for the sacrifices they make while serving our country. In times of war and peace their sacrifices are significant and innumerable.

When caring for a child and serving in the military, parents on the journey of care experience all of the challenges civilian parents on the same journey experience. You can read more about these challenges in our first blog post The Quiet Warrior Next Door.

However, many military veterans confront these challenges while managing through greater complexity and intensity. Deployments, pre-existing post-traumatic stress disorder, distance from family and other support due to service related relocations are just a few among a many other complications that can make the journey of care even more treacherous.

Veterans, thank you for your service!

If you, or someone you know is on the journey of care, know that there are some special resources available to veterans. Start by checking out Operation We Are Here. You will find some amazing resources there that can help you successfully navigate the journey you are on.

May God bless you and keep you.

About the author

If you want to learn more, need help or know someone who needs help check out the following resources:

The Children’s Hospital of Philadelphia Department of Social Work and Spiritual Care: http://www.chop.edu/centers-programs/social-work-and-spiritual-care/about

The LIV Foundation: http://www.thelivfoundation.org/

Operation We Are Here: http://www.operationwearehere.com/EFMP.html