Hello HLC Campers!
We have many kids and teens signed up for camp HLC and we are so excited for May 3-5. If you have not been in touch regarding camp, please do so asap at email@example.com.
For the children and young adults (and parents) who are attending, we have an amazing schedule of activities planned for you. Packets of information will be send this week:
Each packet will include:
1. Camp Schedule
3. Photo Waiver
4. Medical Form
5. Directions to camp - do you have these?
6. Map of Camp
7. Tile Decoration info
8. List of items to bring
Please review all forms (registration, release & waiver, schedule, camper health record), complete them and bring them with you on the 3rd to camp. Any questions can be answered by contacting Jodi at HLC - 609-280-1905 or by sending a note to our email (above). All of camp is free except one activity, if you are interested in participating. Children, teens and parents have a chance to create a camp HLC tile in honor of (or in memory of) their ALS family member. The cost for this activity is $25 per child. And for $40 per child you will also receive a copy of the book, What Did You Learn Today? by Tina Singer Ames. The activity will take place on Sunday before lunch. You can either bring your tile home as a souvenir or add it to the HLC banner which will be a beautiful display shared at our functions.
We look forward to seeing all of you on Friday May 3rd, between 5pm and 7pm. Dinner is being provided.
HLC Board and volunteers
Hope Loves Company is the result of raising three children who have learned about ALS (or Lou Gehrig's Disease) as young children. My late husband, Kevin Gerard O'Donnell, heroically battled ALS from 1995 until his death in 2001. He was funny, handsome, loving and brave. Our daughter Alina was almost three when Kevin was diagnosed. She did not understand why her daddy was different and Kevin and I watched painfully as Alina noticed and adjusted to many changes brought on by ALS.
In 2003 I married Warren Ames and became the mother of two children, Nora and Adam who were then 11 and 7. Nora and Adam lost their biological mother to ALS in 2000. Nora was 9, Adam 6. They, too, are just now learning to express their grief and are starting to talk about how it feels to lose someone you love dearly at such a young age.
ALS has united my family in hope and in love. We live each day with hope for tomorrow and want to help other families who, like us, know ALS all too well. Not a day goes by without remembering Kevin and Tina and the lessons they have given us. Hope Loves Company was formed in their memories.
"If it were not for hopes, the heart would break." Thomas Fuller
Jodi O'Donnell-Ames, Founder and President
HLC is the only non-profit in the U.S. dedicated to the children of ALS patients. Most funding for ALS goes to research and patient care — and that is important. But what about the children? It is estimated that 85% of ALS patients have children, so those children will witness a parent struggling with terminal illness. HLC is unique in its dedication to supporting the children of ALS patients and relatives.
The mission of Hope Loves Company is to provide emotional and educational support to children and young adults who have family members battling ALS.
Hope Loves Company is a non-profit organization founded in 2007. We are a 501 (c)3 non-profit. Our tax exempt number is 20-8418402.
BOARD OF DIRECTORS
Jodi O'Donnell-Ames, President
Linda Cassidy, Secretary
Keiren Dunfee, member
Warren Ames, member
John Heller, member
As My ALS Journey and Family Expands!
ALS entered my life in 1995 when my young husband, Kevin O’Donnell, received his diagnosis. He was only 30 years old and it would be difficult to put into words how that day and diagnosis impacted us for six years, and me for nearly two decades now. I have written extensively about my years with Kevin, as they have shaped my entire life. For his love and companionship, I am truly inspired and grateful. Since that day of Kevin’s diagnosis in May of 1995, I have been on an ALS (Amyotrophic Lateral Sclerosis) journey.
My journey started as I embraced Kevin while we received the devastating news which was incompressible; I heard every other word. Neurological. Terminal. Live. Percentage. Hope.
When Kevin lost his battle with ALS in 2001, I lost a huge part of me. It took me YEARS to accept that he was gone and to understand that having him as my husband for only nine years was better than NEVER having him at all. He was brave, funny, loving and kind. I find myself now, after some of that pain has subsided, understanding that I would not have changed my role as wife, caregiver and advocate, even had I known what would ensue, for anything. It was the greatest role of my life and one for which I am proud.
Today, I live each day in Kevin’s memory – charged with continuing his battle in the fight against ALS and in the hopes of helping new families currently faced with this horrific disease and the enormity of that challenge.
In October 2011, my daughter Alina and I met with the ALS Hope Foundation in Philadelphia to share my non-profit, Hope Loves Company, with them. HLC was formed to provide emotional and educational support to children of ALS patients. We had a great meeting which ended in this suggestion: “You should go to the International MND/ALS meeting in Chicago in December, 2012. Share HLC with others.”
Food for thought. I filed that information mentally.
Since then, with the help of my HLC Board, we have reached out to ALS families all over the United States- offering them our love and support. We have sent free copies of the children’s book, What Did You Learn Today? to families in Connecticut, Pennsylvania, Texas, Washington, Alabama, Tennessee and more.
To read about how the children’s book WDYLT? as well as Nora, Adam and Warren Ames came to bless my life, go to the HLC website and read about yet another incredible journey.
HLC had its first Kid’s Day in June 2012 for ALS children and their families. I was overjoyed to see the positive response from families, volunteers and Waterloo Gardens, all of whom generously embraced the day and HLC. Waterloo Gardens in Exton, PA even donated their grounds for Kid’s Day!
Over the summer, HLC received its first large donation from Steve and Michel Gleason, of Team Gleason — a generous welcome and congrats that officially tagged us as a non-profit organization with big shoes to fill. Steve reminds me of Kevin, living bravely with ALS and making an impact every day from his wheelchair; accomplishing much more than most of us who are not challenged by a neurological disease.
In October, I was reminded that the National Alliance meeting in Chicago was just around the corner. I called in my troops. My dedicated sister-in-law Keiren updated the website and brochure. My dear friend Linda helped with contacts and preparations.
My friend Margaret picked out just the right clothes from my wardrobe.
Riverton Health and Fitness Center and their monthly donations to HLC gave me hope for the camp that I was about to reveal to a very large audience.
My incredible intern Emily created my presentation, one that took us a few visits to perfect.
I lived for weeks, at my computer, in my pajamas, with one goal: share HLC with the ALS community and share it well! There were days when I began my work at 6 am and realized by 3 pm, that I had not had breakfast!
On December 1st, in the midst of Christmas gifts and decoration, I parked my suitcase. My husband Warren loaded our car and drove me to the airport. Best of all, our three amazing children wished me luck and said I would do great. Wow.
The ALS Hope Foundation generously sponsored my trip to the conference and gave me the opportunity to present HLC.
Without my generous team, I would have been back in New Jersey still working, when my plane left for Chicago.
Alone, with the spirit of my team in my heart, I headed to Chicago, slightly apprehensive yet passionate about sharing HLC with the world.
Day 1- I sat in a room of 80 attendees- a menagerie of patients, caregivers, advocates, scientists, doctors, etc… and felt smaller than my already small stature.
My mind wandered.
Will HLC be embraced?
Will others rally behind my cause?
Will my presentation go smoothly?
Will this experience move me forward in my work as an ALS advocate, for ALS families in any way or in many ways? I had no sleep the night before, due to these concerns.
As I looked around the conference room, I sat in awe. Diverse cultures. Diverse appearances. Diverse languages. Conversations were taking place in many languages foreign to me.
How can we unite our efforts when we don’t share a common language?
The first few speakers presented. Ten powerful minutes each. Stem cell hope from Israel. Raising funds suggestions from Australia. ALS forums and their place in the U.S.
I sat stunned. Quiet. Attentive. I nodded in agreement with everything that was being said. Wanted to shout a huge, “Amen!” but avoided the temptation and the opportunity to embarrass myself.
It quickly became clear to me that we did all share a common language at the International MND/ALS Alliance- ALS. We united in the face of ALS and our determination to help make a difference to patients and their families.
Day 2 – It was my chance to present Hope Loves Company. My leg was wiggling back and forth. I began to shiver, yet, I stood and presented HLC and my journey to a room full of reflective strangers. When the HLC video ended , I could hear the shuffling of purses, in search of tissues. As I left the stage, I was greeted by smiles of approval.
For most of my life as an ALS advocate, I have been alone. Kevin’s picture was the impetus for motivating my work. Then I met my husband Warren, his children Nora and Adam and placed a picture of their mother, Tina, next to Kevin’s. Over the last eleven years, I have added hundreds of pictures (in my heart) to that line of heroes gone too soon. But most of my work is done in isolation, just me and the computer and an email address of someone who needs more information, a place to vent, a reason for hope.
Following my presentation, several people came up to me for bear hugs. One man who spoke no English kissed my hand again and again. I have never felt less alone in my ALS journey.
The culmination of Day 2 of the conference ended with a Warm and Fuzzy dinner, as it was aptly named ten years ago.
After a chocolate themed dessert, each of us had the chance to stand and say something. I couldn’t resist.
“This day reminds me of John Heywood’s quote, ‘Nothing is impossible to a willing heart’.”
There, I had learned that in Latvia, Russia people wait six years for wheelchairs.
I had cried with a woman from Taiwan whose young husband lives with ALS.
I had exchanged ideas with a woman from France who helps ALS families.
My willing heart will bring me back to the National MND/ALS Alliance conference next year and I will feel right at home as my ALS journey and family expands.
ALS Amyotrophic Lateral Sclerosis (ALS), more commonly referred to as Lou Gehrig's disease, is a neuromuscular disease that causes damage to the nerve cells controlling voluntary muscle movement. Patients lose the ability to initially control, then eventually, use, most muscles.
There are currently 30,000 patients in the United States who live with ALS. Many patients suffer from muscle weakness. Early symptoms vary with each individual, but usually include tripping, dropping things, abnormal fatigue of the arms and/or legs, slurred speech, muscle cramps and twitches and/or uncontrollable periods of laughing or crying.
As the disease progresses,speech and breathing are also affected.
As a trained teacher, child care provider and mother of three, I know that many children today lead hectic lives. For the most part, both parents are working, there are many complicated family dynamics (divorce, blended families) and children are extremely busy with school, organized sports and social clubs. Add to this mix a terminal illness such as ALS, and life is chaotic to say the least.
So many changes takes place in a home based on the changing needs of an ALS patient. As a patient progresses, a home may need to be altered to accomodate hospital equipment, nurses, and helpful family and friends.
There are other changes too.
A child may feel less able to be a child when he or she has more responsibilities in a home due to a sick parent.
A parent may feel less able to act as a parent as he or she loses control of normal functions, such as walking, talking, eating, etc.
As you can see, ALS has a huge impact on the health and well-being of the ALS patient and his or her entire family.