Hydrocephalus Association

Odds are if you haven’t been affected by Hydrocephalus, you’ve never heard of the Hydrocephalus Association; but for those whose lives it affects, it can have significant impact. It’s my hope this blog will pique your curiosity, and get the conversation started. Everything I’m referencing comes from the website  http://www.hydroassoc.org/; unless otherwise cited.

The Hydrocephalus Association offers a host of information about hydrocephalus on their website, so I’m not going to dive too deep. But at a surface level, I think it’s important to understand there are many ways one can develop hydrocephalus – according to stats I’ve read there are over One MILLION people in the US alone living with hydrocephalus.

Who They Are 

The Hydrocephalus Association serves as the primary nexus for research on hydrocephalus, a condition defined by an abnormal, excessive accumulation of cerebrospinal fluid (CSF) within the cavities of the brain (from website). They are committed to finding a cure to hydrocephalus, and to that end fund research programs and host conferences and workshops.

My introduction to hydrocephalus came at a seminar I presented about financial planning for families with Special Needs. In an almost off-hand fashion a mom informed me her daughter “only” had 13 brain surgeries before her 6th birthday. I may be mistaken on the exact numbers, but it shook me because it was a double digit number.

What They Do 

The Hydrocephalus Association uses a 3-pronged approach to accomplish their mission of eliminating hydrocephalus – they connect families with each other, forming communities offering support and resources; they work on clearing misconceptions and deepening the understanding of what hydrocephalus is, and isn’t; and funding research in biomarkers and genetics (to name a few directions of the research funding).

What Else Should I Know

According to NIH’s National Institute of Neurological Disorders and Stroke, hydrocephalus is a condition caused by excessive accumulation of cerebrospinal fluid (CSF) in the brain; and it may be congenital (present at birth) or acquired (develops at time of birth, or later). It may also be “communicating” – CSF blocked after it exits ventricles; or “non-communicating” – CSF blocked along one or more of the narrow passages connecting the narrow passages connecting the ventricles. The only treatment I was able to uncover is the installation of a shunt, basically a drain inserted into the skull to remove the excess fluid.

For more information, I’ve included a link to NIH’s fact sheet. Personally, I was surprised to learn it’s 30x’s more common than Cystic Fibrosis, because I’m much more familiar with Cystic Fibrosis.

Disclaimer

I am not an employee of the Hydrocephalus Association, and any errors noted are my own. If I have misrepresented, or misstated anything please provide constructive feedback so I may make the appropriate change(s). All opinions and views are my own.

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VET TIX

VET TIX provides tickets to events which reduce stress, strengthen family bonds, build life-long memories and encourage service members and veterans to stay engaged with local communities and American life. We support our troops by honoring their service and providing positive family and life experiences, during and after their years of service to our country (Retrieved from https://www.vettix.org/index.php). As a veteran I’m honored an organization has taken this unique approach to help Active Duty military and veterans; and I want to help them get their message out.

Who They Are 

VET TIX has (2) programs I’m aware of, Tickets for Troops and Hero’s Wish.

Tickets for Troops uses partnerships with major sports teams, organizations and event ticket holders to give active duty military and honorably discharged veterans free and discounted tickets. Military personnel, especially junior enlisted, do not make very much money – this is an amazing opportunity for our service members.

Hero’s Wish aims to ease the burden on families who have lost a loved one (KIA), been injured (WIA) or is currently deployed; by providing a once in a lifetime expense at an event. Their services are available to active duty personnel in a 6 month before/after deployment, severely wounded, or families of those killed in action. They provide a list of current hero’s wishes here.

What They Do 

VET TIX’s website has a link for veterans to create an account – where you will identify the type (active duty, retired, etc). From there they will verify the information, because they want to ensure veterans, and their families, are the ones being served. The applicants will let VET TIX know what event they would like to attend, and from there VET TIX works to secure tickets. The attendees will pay a small fee, much less than the full cost if they were to buy it themselves, to receive their tickets.

What Else Should I Know

 

Two of the three founders served in the military, and the third’s father had served – so all three are familiar with the sacrifices service members and their families experience. Their Core Values of Patriotism, Support & Recognition, Quality of Life and Family really resonated with me – and as I learned more about VET TIX it became clearer and clearer that they are the “real deal”.

Disclaimer

I am not an employee of Vet TIX and any errors noted are my own. If I have misrepresented, or misstated anything please provide constructive feedback so I may make the appropriate change(s). All opinions and views are my own.

Manna Food Center

Manna Food Center is a food bank headquartered in Gaithersburg, Maryland focused on eliminating hunger in Montgomery County, Maryland. It’s a little more localized than the non-profits I usually spotlight; but with something like eliminating hunger I believe it’s more effective to focus locally and spread.

Who They Are 

Manna Food Center is a food bank – they provide food to approximately 40k people each year; in addition to supplying soup kitchens, food pantries and shelters throughout the County. As a food pantry they’ve established distribution sites to enable those who need the help to readily access it. Before meeting with them I had no idea what the difference was between a food bank and food pantry – a food bank stores the food and products; the pantry is what actually distributes the food. A food bank could (and Manna does) supply multiple food pantries.

I was shocked to learn 1/3 of students attending public schools receive free or discounted lunches – because of how wealthy I’ve perceived Montgomery County to be. To be clear – Montgomery County is wealthy, but they also have a large population of seniors and those with disabilities who may struggle given the high cost of living and additional healthcare expenses.

What They Do 

Manna Food Center serves over 3,700 families each month! Rather than list out their strategic plan in detail, I invite (and encourage) you to read about it here. In brief, they have (3) priorities (from their website):

(1) Participant-centered & data driven program delivery

(2) Community Leadership & Advocacy

(3) A values-based business model that supports the people who make our work possible.

What Else Should I Know

They’ve repurposed an old school bus into a mobile kitchen and pop-up pantry; bringing nutritious foods AND providing the opportunity for those living in the communities reached to learn how to prepare them.

Manna doesn’t just provide a handout. They do their best to help those they serve understand the importance of making healthy lifestyle choices, provide them with the opportunity to do so and in many cases bridge the gap when families hit a rough spot; something I think all of us can relate to – even though maybe not to the extent we didn’t know where our next meal(s) were coming from.

Disclaimer

I am not an employee of Manna Food Center and any errors noted are my own. If I have misrepresented, or misstated anything please provide constructive feedback so I may make the appropriate change(s). All opinions and views are my own.

A Mother’s Rest – Retreats for Families of Children with Extra Needs

A Mother’s Rest was founded to give families a chance to get away, by a mother who understands what families like ours experience daily. I’ve never used respite, when my wife was alive I don’t remember it even being a conversation – and it wasn’t because we didn’t want it; I don’t recall ever hearing it presented as an option. I think many families are like mine – we would love a rest/break, but don’t know where to go or feel we can trust anyone else with our children. A Mother’s Rest answers where to go, it has partnerships with B&B’s across the country; and they are actively working to form partnerships with organizations, like Jill’s House, to provide child care.

Who They Are 

“A Mother’s Rest is designed to be a quiet, peaceful sanctuary of fellowship for myself (founder) and others who really understand the fatigues that can come with special needs parenting”. (Retrieved from https://www.amothersrest.org/thefounder).

I think what appeals most, to me, is their belief “RESPITE is not only a period of time, it is a place and a feeling. It’s a reprieve, even if short-lived, from the hardships of everyday life.” When I was on Active Duty my wife was often living as a single mom, and at the time I had no idea how stressful it may have been – now as a single dad of a teen I’m learning first hand about some, but certainly not all, of the challenges she faced and how important getting a break is.

What They Do 

A Mother’s Rest offers affordable retreats across the country, by partnering with B&B’s to give moms, dads and couples an opportunity to get away, unplug, and if desired, hang out with fellow travelers on our journey. Alternatively these retreats offer opportunities to completely unplug – the only agenda I’m aware of is recharging one’s emotional and psychological batteries.

Some other opportunities A Mother’s Rest include grants of up to $2,500 for children and adults with disabilities to attend day or sleep-away summer camps. What an amazing opportunity, not only as a break for parents; but as an opportunity for those attending to learn/improve their social and independent living skills. A Mother’s Rest needs your help to make this a reality – seeking volunteers and donations (more information found here).

 

What Else Should I Know

A Mother’s Rest is the passion project of a mom who is living it, she really understands what it means to raise a child with disabilities, and how important it is to stay grounded – for you and your child. If you have children, with or without disabilities, I believe you can relate to wanting to “get away”. A Mother’s Rest helps us do so; and they are looking to do much, much more. I encourage you to check out their website to learn more.

Disclaimer

I am not an employee of A Mother’s Rest and any errors noted are my own. If I have misrepresented, or misstated anything please provide constructive feedback so I may make the appropriate change(s). All opinions and views are my own.

Charity Connect

Charity Connect was founded by Cristin Caine to “create lifelong volunteers by personally matching clients with their right fit volunteer opportunity and by providing community service education.” They take the time to really connect with the individuals, youth and adults, who want to volunteer; taking the time to understand what their true passion is and making connections with the appropriate non-profits – setting the stage for a long and enriching relationship for all involved parties!

Who They Are 

Charity Connect currently is just serving Montgomery County, Maryland; building relationships with schools, neighborhoods and non-profits. They are an organization whose core belief is you don’t have to be wealthy to be philanthropic. Charity Connect’s premise is most people want to contribute, but they don’t know how; or they’ve tried and had negative experiences. Their focus is on ensuring everybody has the best opportunity to have a positive and memorable experience possible.

What They Do 

 

Charity Connect takes the time to understand what each prospective volunteer is looking for – not just the type of organization they want to volunteer with; but also what the volunteer’s strengths and passions are – because when these are tapped into it’s more likely the volunteer will enjoy his/her time with the non-profit, and the non-profit will see the best of the volunteer.

Charity Connect works with students, from preschool to college, generating excitement around volunteering and making it more than just being about ensuring you have enough student service learning (SSL) hours. However, it’s not just for youth – adults of all ages are more than welcome to connect and volunteer.

Cristin’s team works with the client (potential volunteer) to “develop and facilitate a comprehensive project including volunteer service, fundraising, and advocacy for special occasion and other in-depth service projects.” This really appeals to me, because too often I’ve seen people volunteer with a non-profit that didn’t really have a clear plan of what to do with them. This led to a less than enjoyable experience for the volunteer, and the non-profit loses a potential resource. Not only that, there’s a chance the individual shares his negative experience, because it’s an unfortunate truth people are more willing to share these than they are to share a positive experience.

What Else Should I Know

Charity Connect can be of service to anybody and everybody, in my humble opinion. If you own a company and you’re looking to build corporate goodwill, Cristin can work with you to match a non-profit with your company’s mission and corporate culture. I think I’ve already shown the benefit available to youth and adults. Non-profits struggle with finding the right types of volunteers, working with Charity Connect could provide a ready, on demand resource. Finally, I think parents and students are burned out on the same old same old when it comes to options to fulfill their SSL requirements. Cristin can offer a fresh perspective, and potentially opportunities you never would’ve considered.

Disclaimer

I am not an employee of Charity Connect and any errors noted are my own. If I have misrepresented, or misstated anything please provide constructive feedback so I may make the appropriate change(s). All opinions and views are my own.

Madison House Autism Foundation

Madison House Autism Foundation (“Madison House”) was founded to help families give their sons and daughters with Autism opportunities to live independently, or as independently as possible, upon transitioning from High School. They recognize the lack of services currently available to individuals with Autism after the supports provided during the school years have been removed; and are working with communities to create natural support networks. To name just a few of the ways they are doing this: through supporting/promoting public policy, training first responders and partnering with other, like-minded organizations.

Who They Are 

 

Madison House Autism Foundation was founded in 2007 by JaLynn and Gregory Prince, and named for their son Madison. Rather than try to tell their story for them, follow this link: How We Began

What They Do 

Where to begin?! they offer a host of resources on their website – including links for housing, medical and jobs (and much, much more)! Their housing programs include Madison Fields; envisioned as an “agrihood” found on a 400-acre farm complete with a barn and fields for hippotherapy (therapeutic horse-back riding).

The Medical tab takes you to another page, with a video interview of a physician (Faith Frankel, MD) and links to yet even more resources. If you’re still not convinced you need to at least learn more about Madison Fields, consider how few resources there are for parents like you and me, who either have or will have, adult children on the Autism Spectrum. Autism is not a disease, and there are no factors affecting mortality – so our children can fully expect to live a long life – how full and enriching of a life is in a large part up to us as parents.

 

What Else Should I Know

I love how much information Madison House was able, and willing, to aggregate and share. There are no requirements to become a “member”, everything is open-sourced with links addressing the questions I often find myself dwelling on, and I’m sure I’m not the only parent doing so. Questions like “What are my adult child’s employment options?” and “How will we pay for our adult child’s everyday living and service needs?

Disclaimer

I am not an employee of Madison House Autism Foundation and any errors noted are my own. If I have misrepresented, or misstated anything please provide constructive feedback so I may make the appropriate change(s). I’m doing my best to continue posting about one organization a month, using information and notes I took when I met with them – as well as additional research I completed online. The featured image is a picture I took while visiting Madison Fields. All opinions and views are my own.

Charitable Giving – A Gift to Yourself

I think most of us know it’s possible to receive a deduction from your income taxes when you donate to a charity, whether it’s clothes, cash or even a vehicle; but if you’re like me this in and of itself is not enough incentive to give.

I need to understand the organization’s mission, and believe in it, before I give of myself – either time or money. Understanding and believing in a mission gives me a sense of reward when I donate, because I know my contribution is going to something larger than myself and I can often see the results of the work the organization is doing. My bias is towards organizations helping those with disabilities and veterans, because of my background; and I think it helps to have a personal connection when deciding which charities to support.

Let’s discuss financial giving. Many non-profits subsist entirely from public donations. They create their annual budgets from the contributions they expect to receive, supplemented with any assets they’ve accumulated; and although they would love to have a dollar for dollar match of contribution to their mission, the unfortunate truth is most have overhead to pay – salaries, rent, utilities, etc. For this reason it can be more favorable for the non-profit to receive a commitment in level monthly contributions rather than sudden large sums. Imagine getting your entire year’s salary on January first, and planning every week’s/month’s expenses around this.

I don’t have any published studies I can reference, but I believe the vast majority of us are willing, and able, to donate to charity – but many are not now because either they haven’t found any that resonate with their beliefs and/or they don’t feel what they can afford to give would have impact.

Both of these are valid concerns. To find a non-profit which resonates, I recommend setting an hour or two aside and asking yourself what you’re truly passion about. It’s going to be different for everyone, but I think there is a non-profit aligned with just about everybody’s passions. Another way to find a non-profit is to ask friends, family and/or trusted advisors.

With regards to the value of your donation, although it sounds trite and overused, every dollar really does count. Let’s imagine every working adult donates 1% of their annual income. Using the United States Census Bureau’s median income of ~$54,000/year (rounded up to nearest thousand, source: Census Bureau), each individual would donate $540/year, or $45/month. Let’s assume a community of 500 people give this to the same non-profit every year; the money available to the non-profit has increased to $270,000!!! What an impact!!!!!

Maybe you can’t afford to give cash, but you’re willing to volunteer (2) hours every month. You could save the non-profit money by offering your skills and/or services. For example, using the same median income of $54,000/year, your hourly wage would be approximately $26/hour. $26/hour times 2 hours/month equals the equivalent of $624 per year saved by the non-profit. Even if the volunteer hours you provide are for unskilled labor, and we use the Federal minimum wage as a guide ($7.25/hour, Dept of Labor), you would be saving the non-profit an equivalent of $174/year. This number will scale up as the number of volunteers increases, but the need will be driven by the type of work the non-profit does. For example, Habitat for Humanity will likely have many more opportunities for volunteers than the Arc United States may.

I hope this illustrates the impact we can ALL have, regardless of income level. And I can’t begin to describe the feeling when you find the right fit; but in my opinion it becomes its own reward. The trick is finding the right fit, and not becoming discouraged if the first attempt or two isn’t successful. Take your time and do your homework, there are free resources like GuideStar to help you research non-profits; as well as working with Financial Planners like myself. Speaking only for myself, I enjoy connecting my clients with non-profits and helping them realize their philanthropic goals!!!!